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Bombaloo
Phoenix
Joined: Apr 01, 2010
Posts: 1395
Location: Big Sky Country
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 Posted: Fri Jun 01, 2012 6:03 pm Post subject: Re: Fears |
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| daclark5 wrote: | | Going back to the big R label. I think people are more compassionate to a child or adult who is mentally impaired. I think people fear what they can't see. I remember my friend coming home from the pediatrician, where she learned her son has autism. Her life changed forever on that day, but her biggest fear was that her son looked "normal" and that no one would be able to see that there was something wrong with him, until perhaps it was too late and he got physically hurt. She felt if they could see his autism he would be treated better. Do you feel that way? |
I think the "he looks normal" situation is a real concern. Like it or not, most people have certain expectations of other people based on how they look. For example, if you see a small child that appears to be just learning how to walk, you don't expect them to carry on a lengthy conversation. You may not really expect a child that age to remember to say please or thank-you. On the other side of the coin, if you see a school aged child that does not "appear" to have any obvious disabilities, you may expect him or her to be able to follow directions from an adult and participate in group activities (as a couple of examples). An adult may also expect that a school age child would look at them when the adult is talking and respond appropriately. These are all things that my son's peers generally do but he generally does not do. For an adult who does not know him and who does not know much about kids with disabilities, he just looks like a bad kid and he sometimes gets treated that way, usually with pretty catastrophic results. I would think that kids with other types of neurological conditions probably have the same trouble. If you could see autism or ADHD (or many of the other conditions where there are generally no specific outward appearance characteristics) I think it would make a difference with the expectations that some people have. Of course, being able to "see" autism would also come with a range of difficulties. |
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cyberdad
Phoenix
Joined: Feb 22, 2011
Age: 45
Posts: 1603
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| Posted: Fri Jun 01, 2012 6:59 pm Post subject: Re: Fears |
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| daclark5 wrote: | | Going back to the big R label. I think people are more compassionate to a child or adult who is mentally impaired. |
This is small comfort to the parents. And no, people aren't always more compassionate, they just have more warning to run. |
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daclark5
Butterfly
Joined: May 21, 2012
Posts: 16
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| Posted: Fri Jun 01, 2012 7:09 pm Post subject: Re: Fears |
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| cyberdad wrote: | | daclark5 wrote: | | Going back to the big R label. I think people are more compassionate to a child or adult who is mentally impaired. |
This is small comfort to the parents. And no, people aren't always more compassionate, they just have more warning to run. |
Unfortunately you may be right, people often look for the easy out. I saw a mom on a news show talking about how her son's physical appearance caused children to stare and parents to snap at their children for staring. She took those opportunities to have her son share his disability with both the staring child and snapping parents. One small step in the right direction don't you think? |
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daclark5
Butterfly
Joined: May 21, 2012
Posts: 16
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| Posted: Fri Jun 01, 2012 7:21 pm Post subject: Re: Worse fears |
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| Wenmic wrote: | I was ready to say "ditto" to many of the replies submitted as worse fears for our children. But then it struck me that what we all might be dealing with is an insensitive world. We know the beautiful aspects of our children, but because some of their behaviors are off the spectrum of what is considered normal, they are shunned by many. How much potential is lost because the world is ignorant?
As an educator or someone who works with autism, educate the rest of the world to accept differences, and many of our fears many be lessened. |
Thank you for your response. |
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MomofThree1975
Deinonychus
Joined: Mar 14, 2012
Posts: 367
Location: NYC
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| Posted: Fri Jun 01, 2012 11:35 pm Post subject: Re: Fears |
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| Bombaloo wrote: | | daclark5 wrote: | | Going back to the big R label. I think people are more compassionate to a child or adult who is mentally impaired. I think people fear what they can't see. I remember my friend coming home from the pediatrician, where she learned her son has autism. Her life changed forever on that day, but her biggest fear was that her son looked "normal" and that no one would be able to see that there was something wrong with him, until perhaps it was too late and he got physically hurt. She felt if they could see his autism he would be treated better. Do you feel that way? |
I think the "he looks normal" situation is a real concern. Like it or not, most people have certain expectations of other people based on how they look. For example, if you see a small child that appears to be just learning how to walk, you don't expect them to carry on a lengthy conversation. You may not really expect a child that age to remember to say please or thank-you. On the other side of the coin, if you see a school aged child that does not "appear" to have any obvious disabilities, you may expect him or her to be able to follow directions from an adult and participate in group activities (as a couple of examples). An adult may also expect that a school age child would look at them when the adult is talking and respond appropriately. These are all things that my son's peers generally do but he generally does not do. For an adult who does not know him and who does not know much about kids with disabilities, he just looks like a bad kid and he sometimes gets treated that way, usually with pretty catastrophic results. I would think that kids with other types of neurological conditions probably have the same trouble. If you could see autism or ADHD (or many of the other conditions where there are generally no specific outward appearance characteristics) I think it would make a difference with the expectations that some people have. Of course, being able to "see" autism would also come with a range of difficulties. |
This is true, and I understand where you are coming from. But since my son has such an hard time with communication, I would prefer that he could communicate, over him appearing rude or insensitive. |
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cyberdad
Phoenix
Joined: Feb 22, 2011
Age: 45
Posts: 1603
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| Posted: Sat Jun 02, 2012 10:43 pm Post subject: Re: Fears |
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| daclark5 wrote: | | cyberdad wrote: | | daclark5 wrote: | | Going back to the big R label. I think people are more compassionate to a child or adult who is mentally impaired. |
This is small comfort to the parents. And no, people aren't always more compassionate, they just have more warning to run. |
Unfortunately you may be right, people often look for the easy out. I saw a mom on a news show talking about how her son's physical appearance caused children to stare and parents to snap at their children for staring. She took those opportunities to have her son share his disability with both the staring child and snapping parents. One small step in the right direction don't you think? |
I don't know? I prefer not to draw attention as it's often not inquisitive questions, it's just staring and incredulous looks.
We were looking for a music school for our daughter and was talking to the principal. He at no time registered that there was anything wrong with my daughter until he coughed and she clung to my wife for comfort. He stared at her for a few seconds and I could see his mind working...what's wrong with this one? To be honest it's tedious to have to explain to people things like autism because nobody appreciates or cares (in reality) so I don't bother. |
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McAnulty
Toucan
Joined: May 09, 2012
Posts: 258
Location: Montreal
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| Posted: Sat Jun 02, 2012 10:47 pm Post subject: |
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I'm terrified of what will happen when I die or am too old to take care of my son if he is unable to do it himself. He's very young so I have no idea what the future holds for him. Group homes are awful here, everyone is neglected, no one cares about quality of life, they just keep people alive. So many people end up regressing in some of the places around here because they are squished into homes with staff who have no training. People with severe auditory hypersensitivity are in the same house as people who are screaming and breaking things every day. My boyfriend works in the field and the things he sees are unimaginable.
I want my son to enjoy every day of his life as much as possible and I'm so afraid he will be neglected or mistreated when the day comes when I can't care for him. I don't want him to feel abandoned and alone. I am hoping that if he is unable to fend for himself he will at least manage to have people around him to love him and look out for him. |
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momsparky
Phoenix
Joined: Jul 27, 2010
Posts: 2726
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| Posted: Sun Jun 03, 2012 9:27 am Post subject: |
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Regarding the "R" word and its ramifications: we are slowly getting there. The fury unleashed in the US when a comedy movie made use of the term has started a movement where people with cognitive disabilities are standing up for themselves and showing the world they are individuals with feelings and value. I think very, very slowly, we as a global culture are starting to come around to the idea that everyone has a place in the world, and the right to seek out that place - pursue happiness, if you will. We're starting to learn that we've been shortchanging the cognitively impaired in particular, and finding better ways to be inclusive and tolerant.
I like this video by the National Downs Syndrome Congress (many people with Downs also have a cognitive delay) http://youtu.be/-cA3t1HW1Ow
While I understand the fear (if nothing else, every diagnosis pretty much means more work for parents,) I remember the days when our biggest fear was to have a child with autism. It looks scary on the outside, but I think it's like anything else: your kid is not a diagnosis, they are yours and you love them. |
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bethaniej
Snowy Owl
Joined: Mar 10, 2010
Posts: 162
Location: Charlotte, NC
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| Posted: Mon Jun 04, 2012 5:19 pm Post subject: |
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| my biggest fear is that my daughter will be alone, or lonely. |
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apmumof7
Emu Egg
Joined: Mar 27, 2012
Age: 51
Posts: 2
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| Posted: Mon Jun 18, 2012 8:01 am Post subject: |
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I really worry about dying early, it makes me cry thinking about it. My son is lucky as he has 6 older brothers and sisters but says when I die he is going to kill himself.
He is very tall for 13 so more is expected of him as he looks around16. He also has dyspraxia quite bad so people think he has a interlectial disability which he hasn't. As he has been home schooled he has not been teased so his speech dose not bother him.
I try to dress him in the latest fashion but as you all know this can be hard. He may want to go out with tshirts inside out lol |
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nostromo
Honk-honk Hippo
Joined: Mar 13, 2010
Age: 45
Posts: 3198
Location: At Festively Plump
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| Posted: Tue Jun 19, 2012 5:48 am Post subject: |
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| McAnulty wrote: | I'm terrified of what will happen when I die or am too old to take care of my son if he is unable to do it himself. He's very young so I have no idea what the future holds for him. Group homes are awful here, everyone is neglected, no one cares about quality of life, they just keep people alive. So many people end up regressing in some of the places around here because they are squished into homes with staff who have no training. People with severe auditory hypersensitivity are in the same house as people who are screaming and breaking things every day. My boyfriend works in the field and the things he sees are unimaginable.
I want my son to enjoy every day of his life as much as possible and I'm so afraid he will be neglected or mistreated when the day comes when I can't care for him. I don't want him to feel abandoned and alone. I am hoping that if he is unable to fend for himself he will at least manage to have people around him to love him and look out for him. |
Yep thats my worries right there. Group homes as such are a hell of a lot better than that here though, they tend to end up living in the community say 3-4 adults in a house and they have helpers.
I do have this hope/fantasy that they will work out what autism is and find a reasonably effective cure by the time he is in his twenties. Pathetic I know, but I like to think about it and imagine what it would be like. |
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angelbear
Phoenix
Joined: Sep 12, 2009
Posts: 1112
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| Posted: Tue Jun 19, 2012 4:51 pm Post subject: |
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I had my son when I was older, and he is an only child. My biggest fear is that he will not have anyone to look after him when we are gone (if he cannot do it himself). I agree with another poster, I am not as concerned about what his grades are. Of course I want him to learn and be able to graduate high school, but I am more concerned about teaching him life skills.
I also worry that I overprotect him too much. But he is clumsy, and I am always watching him to make sure that he isn't getting hurt. He does not always pay attention to where he is walking or what he is doing.
I also worry that he will end up alone and lonely as he has pretty much zero desire to make any friends at this point. He is almost 7 and has never had a friend and has no desire to.
These are my worries, and I cannot do a thing about any of them except do the best I can to teach him how to take care of himself. |
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MomofThree1975
Deinonychus
Joined: Mar 14, 2012
Posts: 367
Location: NYC
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| Posted: Wed Jun 20, 2012 1:16 pm Post subject: |
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| angelbear wrote: | | I had my son when I was older, and he is an only child. My biggest fear is that he will not have anyone to look after him when we are gone (if he cannot do it himself). I agree with another poster, I am not as concerned about what his grades are. Of course I want him to learn and be able to graduate high school, but I am more concerned about teaching him life skills. |
I totally agree with this. This is why I will always push my son to engage the real world, since he will have to manuever it, maybe on his own, when we are gone. No sense in have several degrees if he cannot cross the street. |
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aspiewifeandmom
Butterfly
Joined: Jun 20, 2012
Posts: 13
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| Posted: Wed Jun 20, 2012 6:46 pm Post subject: |
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| My concerns for my son are that he will look the part of normal, but never quite fit in. That he may never know pure joy, or find comfort in a relationship with a true friend. He is brilliant, but tragically suffers from depression, so between bouts he can function, but I fear for the day that I am not there to scrape up the pieces. I fear that he may not be able to hold a serious job for any length of time. I fear that he will turn to drugs for comfort and escape. A beautiful human mind, so smart, so capable, but so burdened. |
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Treysar
Tufted Titmouse
Joined: Jun 17, 2012
Posts: 30
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| Posted: Thu Jun 21, 2012 6:27 pm Post subject: |
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| My biggest worry is that my children will feel sad & alone because they will be unable to communicate. |
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