is anyone else frusturated with an easy label? putting on my flame suit. i am tired of people getting labeled autistic when they clearly are not & abusing the system. call it ADHD or ADD but not part of the high funtioning autistic spectrum. there needs to be a new definition, not this so called spectrum. my brother is autistic he can not live on his own, he functions as a 6 year old at 18, he cant cook, he cant speak but a few words, he has difficulty communicating & interacting, he doesnt drive or date, he cant support himself or work, he has a hard time concentrating & is ocd about activities & repatition, he is partially deaf, sensitive to too much noise or stimulation & has colitis, he is handicapped. now dont get me wrong there are many individuals who are disabled but there are to many able minded, able bodied people abusing the system that is here to help the truelly handicapped.
is anyone else frusturated with an easy label?
- Thread starter twojo21
- Start date
DISoriented
Earning My Ears
- Joined
- Feb 25, 2005
What "system" are people abusing? You need to be more specific. The eductional system? The medical system? The GACs at Disney? What are you talking about?
My son has PDD-NOS. He doesn't meet the criteria for Autism but has all the flavorings of it. Fanning himself, inability to concentrate, not being able to sit still, easily overstimulated, prone to meltdowns, extremely rigid, just to name a few. But he's also got a very high IQ, an amazing memory and is the most loving boy one could hope to meet. I would give the world to have my son be "normal." You (general you) can take your labels and your system. I don't want them. I don't want my son in special ed. I don't want to see the weird look on people's faces when he starts asking inappropriate questions when we're out in public. I don't want him to try over and over to be friends with the kids at the bus stop, who can't relate to him and probably think he's weird. Yes, small beans compared to your brother, but my reality nevertheless. I'm getting him what he needs to get through in this world.
I cannot fathom why anyone would want to "slap a label" on their kid. Why stigmatize them when you don't need to? What benefits do the parents of Autistic Spectrum kids enjoy? Lay them out please, because I'd like to live high on the hog too.
My son has PDD-NOS. He doesn't meet the criteria for Autism but has all the flavorings of it. Fanning himself, inability to concentrate, not being able to sit still, easily overstimulated, prone to meltdowns, extremely rigid, just to name a few. But he's also got a very high IQ, an amazing memory and is the most loving boy one could hope to meet. I would give the world to have my son be "normal." You (general you) can take your labels and your system. I don't want them. I don't want my son in special ed. I don't want to see the weird look on people's faces when he starts asking inappropriate questions when we're out in public. I don't want him to try over and over to be friends with the kids at the bus stop, who can't relate to him and probably think he's weird. Yes, small beans compared to your brother, but my reality nevertheless. I'm getting him what he needs to get through in this world.
I cannot fathom why anyone would want to "slap a label" on their kid. Why stigmatize them when you don't need to? What benefits do the parents of Autistic Spectrum kids enjoy? Lay them out please, because I'd like to live high on the hog too.
New trend in the 'yuppie' neighborhood I grew up in - high school students getting IEPs so that they can have extended time on all tests done at school, as well as state testing and SATs. The new 'trendy' diagnosis is a non-hyperactive ADD. It has it's own initials but I can't remember what the head of the English Dept. at the school called it. She's a bit amazed at how many parents of students in honors classes are now requesting that their student get 'that testing so-and-so had done'. This is from a very upper class school, where everyone is 'above average', like the classic Lake Wobegone tales.
I've often wondered if my DD11 should have had an IEP in elementary school. She was born with a birth defect in her right eye, had no binocular vision until surgery corrected about 80% of the problem. She had balance and co-ordiantion issues, but passed all of the pre-school screening done here. I could have pushed the issues, but I didn't, because she seemed to have enough coping strategies in place on her own.
DD14 used to flap her hands when excited, and always runs with her right arm tucked in funny. She has a hard time telling if her legs are straight, toes pointed, etc. At the time all this was noticed only because it was important to have straight legs and pointed toes in gymnastics. Otherwise, she was coping just fine. But I always wondered if I should have had her tested as well.
What I'm trying to say is, we all want what is best for our children. We want them to be able to succeed, with all the tools/advantages available to be given to them. When parents notice that their child isn't following the 'normal' expectations, then they want to make sure that the resources to help that child reach 'normal' are available to their child. Everyone wants their child to be 'above average'. But we can't all live at Lake Wobegone, can we?
I hope this makes sense and doesn't offend. It's hard this morning to get the meaning of my words across the way I want them to sound.
I've often wondered if my DD11 should have had an IEP in elementary school. She was born with a birth defect in her right eye, had no binocular vision until surgery corrected about 80% of the problem. She had balance and co-ordiantion issues, but passed all of the pre-school screening done here. I could have pushed the issues, but I didn't, because she seemed to have enough coping strategies in place on her own.
DD14 used to flap her hands when excited, and always runs with her right arm tucked in funny. She has a hard time telling if her legs are straight, toes pointed, etc. At the time all this was noticed only because it was important to have straight legs and pointed toes in gymnastics. Otherwise, she was coping just fine. But I always wondered if I should have had her tested as well.
What I'm trying to say is, we all want what is best for our children. We want them to be able to succeed, with all the tools/advantages available to be given to them. When parents notice that their child isn't following the 'normal' expectations, then they want to make sure that the resources to help that child reach 'normal' are available to their child. Everyone wants their child to be 'above average'. But we can't all live at Lake Wobegone, can we?
I hope this makes sense and doesn't offend. It's hard this morning to get the meaning of my words across the way I want them to sound.
Not to start a thing-----but I have a daughter who is 4.5, with high fxning autism. BUT SHE IS AUTISTIC!! We spend over $200,000 per year to help her get as far as she is able in life (with family support, btw)
She is only 4, so she blends pretty easily. But it is becoming clearer everyday as her age peers pass her socially and behaviorally. Blending at age 10 is much less likely.
However, as we are paying privately for 99% of her treatments, I am perfectly happy to accept any "benefits" we can get. This isn't a broken leg that will heal. It is a life-long neurological disorder. We are taking our 2 girls to WDW in 8/05 and will take advantage of guests w/ special needs and our handicap. parking, etc. Please do not judge us . If it were my choice, I'd have a typical kid and avoid all services. The last 2.5 yrs of my life have been hell. I'd gladly change shoes.
BTW MY 3rd child has also been dx'd w/ autism at 18 months.
At times, I wish they were downs syndrome, so people didn't think we were faking it. But I am living with the cards I have been dealt. I have 1 typical kid, 1 high fxng kid, and 1 whose future is unclear.
Please do not judge a family or book by it's cover. Things are not always what they seem.
Marlene
She is only 4, so she blends pretty easily. But it is becoming clearer everyday as her age peers pass her socially and behaviorally. Blending at age 10 is much less likely.
However, as we are paying privately for 99% of her treatments, I am perfectly happy to accept any "benefits" we can get. This isn't a broken leg that will heal. It is a life-long neurological disorder. We are taking our 2 girls to WDW in 8/05 and will take advantage of guests w/ special needs and our handicap. parking, etc. Please do not judge us . If it were my choice, I'd have a typical kid and avoid all services. The last 2.5 yrs of my life have been hell. I'd gladly change shoes.
BTW MY 3rd child has also been dx'd w/ autism at 18 months.
At times, I wish they were downs syndrome, so people didn't think we were faking it. But I am living with the cards I have been dealt. I have 1 typical kid, 1 high fxng kid, and 1 whose future is unclear.
Please do not judge a family or book by it's cover. Things are not always what they seem.
Marlene
Nik's Mom
DIS Veteran
- Joined
- Dec 22, 2001
Maybe I'm misunderstanding the op. I'm not flaming here, only trying to see if I understand you.
My son is high functioning autistic. Are you saying that he should not be able to receive special services? I'm not sure if that's what you are saying. Even though he is considered high functioning, he definitely has a disability. He is prone to melt downs, makes noises constantly (like monster noises or star wars sound effects), gets antsy in lines and hates to have people to close to him. These are just a few of his problem areas. It is obvious to most people that he has something wrong with him. I know this because I see people staring at times (don't you all just hate that).
So, yes we do utilize special services when necessary. He has an IEP and goes to special day classes, and we did get a GAC on our last trip, although we actually only had to use it once.
If you are saying that only lower functioning children should be eligible for special services, I respectfully disagree.
If you are voicing your concern that some sick parents would fake their childs disability just to get special services, then I agree that those parents are twisted people. I wouldn't wish autism on anyone and certainly wouldn't slap that label on my child unless it were true.
I go to this board because there are so many other parents who are raising autistic children and I value their advise! I've learned a lot from my fellow Dis'ers. And I know when my son was diagnosed, the people from this board were there to comfort me.
My son is high functioning autistic. Are you saying that he should not be able to receive special services? I'm not sure if that's what you are saying. Even though he is considered high functioning, he definitely has a disability. He is prone to melt downs, makes noises constantly (like monster noises or star wars sound effects), gets antsy in lines and hates to have people to close to him. These are just a few of his problem areas. It is obvious to most people that he has something wrong with him. I know this because I see people staring at times (don't you all just hate that).
So, yes we do utilize special services when necessary. He has an IEP and goes to special day classes, and we did get a GAC on our last trip, although we actually only had to use it once.
If you are saying that only lower functioning children should be eligible for special services, I respectfully disagree.
If you are voicing your concern that some sick parents would fake their childs disability just to get special services, then I agree that those parents are twisted people. I wouldn't wish autism on anyone and certainly wouldn't slap that label on my child unless it were true.
I go to this board because there are so many other parents who are raising autistic children and I value their advise! I've learned a lot from my fellow Dis'ers. And I know when my son was diagnosed, the people from this board were there to comfort me.
Mike Bartenhagen
Mouseketeer
- Joined
- Jun 2, 2000
I don't think twojo21 was judging anyone in particular but I do understand what she is saying. I posted here a few months ago about a new book for people with Special Needs going to Disney which included a lot of information about overweight people. My son has 100 + seizures everyday which we haven't been able to control and to have a book which puts him under the same umbrella as someone who won't control their weight is really a stretch. I think some in the SN community get frustrated because it seems as though there are a lot of people that try to expand the defenition of SN to fit any issue that many parents face everyday.
Mike
Mike
Forevryoung
DIS Veteran
- Joined
- Jan 30, 2005
Children dont fit into boxes.
Society today thinks that any child not in the "gifted" program in the elementary schoolds needs services to help them improve to that "gifted" level; thus they need a reason for providing the services (aka a diagnosis) and thus it becomes very easy to label a child. I hate the fact that society consistantly tries to explain a child's behavior by labeling it.
Society today thinks that any child not in the "gifted" program in the elementary schoolds needs services to help them improve to that "gifted" level; thus they need a reason for providing the services (aka a diagnosis) and thus it becomes very easy to label a child. I hate the fact that society consistantly tries to explain a child's behavior by labeling it.
bumpysheep
Mouseketeer
- Joined
- Mar 28, 2005
twojo21 said:
I'm autistic and very offended by your post. I was diagnosed back in 1983 when people had no idea what Autism was. I've worked VERY hard, and so has my family to get me to the point where I am today. I said my first word at age six and did not speak in sentaces until I was eight. I still have trouble talking and can only verbalise responses under certain sircumstances. I have two cousins that at your brother functional level it sound like at they are age 19 and age 21. I have another that is much lower functiong that you brother and he is 23. We all have Autism because of Tuberous Scerlosis a genetic disorder, and its is the second most genetic cause of Autism. I know and have met many people with less skill than I have and I know some with more. I know some people with Aspergers Syndrome and they have not seemed Autistic to me, but who am I to judge what any person feels inside and who are you to do so?
A recent study has shown that doctors surveyed admit to diagnosing Auitsm or one of the PDD when that is not the problem so kids will get services. Why is it so bad that any person who need help not get it?
I can cook with a microwave and get to my volunteer job. I live alone with the help of an agency the gives case management to people with Autism. Though most days I am at a family friends home because it is easier for me. Until you live a persons life you are in no position to say what they are capable of and if they are taking advantage. I went through special ed schools preparing me to get as far as I did and I am very proud.
This thread is getting ugly.
How can you tell a person who "won't control their weight" from one who has uncontrollable weight gain from long term use of Depakote (a seizure medication)? From now on I'll be sure to carry before and after pictures, in case someone else feels it is their business.
How can you tell a person who "won't control their weight" from one who has uncontrollable weight gain from long term use of Depakote (a seizure medication)? From now on I'll be sure to carry before and after pictures, in case someone else feels it is their business.
bumpysheep
Mouseketeer
- Joined
- Mar 28, 2005
spotdog said:This thread is getting ugly.
How can you tell a person who "won't control their weight" from one who has uncontrollable weight gain from long term use of Depakote (a seizure medication)? From now on I'll be sure to carry before and after pictures, in case someone else feels it is their business.
I took Depakote for a couple of years before I outgrew my seizures at adolescene. I gained nearly 50lbs in just the first two months. It took me a year off that med to get back to a normal weight. I don't think you can tell.
Mike Bartenhagen
Mouseketeer
- Joined
- Jun 2, 2000
I am familar with Depakote, my son was on it for about a year. I don't care if a person weighs 100 pounds or 1000 pounds that is their business. My point was that the vast majority of overweight people could control their weight if they felt they wanted to so to put this in a book about Special Needs really discounts the uncontolable struggles that kids with CP, E, DD, Autism, and many other disorders go through everyday.
Mike
Mike
Stacey2grls
<font color=blue>Am currently on a "see food" diet
- Joined
- Aug 25, 2004
Wow, I really wonder where the op was trying to go with this topic. My daughter is DD is 5. She is diagnosed as having ADHD, and Sensory Integration Dysfunction. She also has some autistic characteristics. Why there is no doubt that the OP's brothers case is more severe than the other situations posted here. Our children still need their services. If I could I would eat my own hand off to make my daughter "normal." As time goes on she tends to stick out more, and I cringe inside everytime I know she is being watched or stared at. I also lay awake at night worrying about every possible scenario of her future. I would do anything to make things right for her. 
Forevryoung
DIS Veteran
- Joined
- Jan 30, 2005
I myself have taken Depakote (as a mood stabilizer) among other things. Besides gaining weight, it made my hair fall out. So not only was I depressed but I was a fat, bald, depressed 15 year old
Nobody has a right to judge anyone else. There are plenty of reasons someone is overweight and there might be no reason including no fault of their own. When I see someone who is overweight, I pray that they are happy and that they are seeking medical attention to make sure that they control the complications associated with being overweight.
Nobody has a right to judge anyone else. There are plenty of reasons someone is overweight and there might be no reason including no fault of their own. When I see someone who is overweight, I pray that they are happy and that they are seeking medical attention to make sure that they control the complications associated with being overweight.
i'm not trying to hurt anyone, i am simply frusturated with people abusing the educational, medical/medicare/disability systems. these systems were created for individuals with disabilities to have a fulfilling life not a doctor who wants to throw a label on a child which is to commonly done now so people can just get services. these services are for the handicapped not just anyone. i am very proud of my brother & all his accomplishments so dont get me wrong, i am simply frusturated when the handicapped arent getting the assistance & help they need to grow. my family & i do everything in our power but its not enough. i just think assistance needs to be given based on the severity when dividing up funds & programs to the disabled & their families. too many disabilities are clumped together in schools, the medical world, goverment & society. i just think there is alot to strive for to improve the quality of life for the disabled & each individual disease/condition/handicap. i'm not sure if my posts are coming out all wrong but if this thread is becoming overly offensive, webmasters please delete.
bumpysheep
Mouseketeer
- Joined
- Mar 28, 2005
twojo21 said:
You post (the one above) sound like you are saying because you brother has less skills than SOME others with the diagnosis, he should get more or priorty funding. The problem with that is there will always be somebody more severe. And those who have more skills can go downhill without the supports we have or need.
A good example would be say you brother gets hes needs met. And because I have more skills than him I only get some of my needs met. Then what happens to the person who is still disabled but has even more skills. Yes doctors use label for services. But they use them because the services are needed. Not only the most apparent cases of Autism need services. If my current services are ever reduced I'm in big trouble. Even withe the weekly services I get, and daily help from family I sometimes think I have given all I have to give.
Life is unfair, and you need to get used to it. There are a lot of things I need related to my disabilites that I can not get or do not have. Just like there are lots of things LOTS of other people need because of disabilty. You need to get over it because it's going to be the story of your life.
minkydog
DIS Cast Member
- Joined
- Dec 8, 2004
bumpysheep said:
Well said. Disabilities come in many flavors, shapes, and colors
I used to have a big problem with my 10yo son's labels(mentally retarded. autistic, blind, deaf, incontinent) until I realized that those labels help him get the services he needs at school and in the community. His care is getting harder and harder every year. If something were to happen to my DH I would probably have to put DS into a home because I simply could not cope with the excessive demands on a 24hr a day basis.
But that's life. It's unfair and we have to make the best of what we have this day and understand that things change constantly. I certainly don't begrudge anyone else getting services which help them live and prosper. All the money in the world would not make my son have a whole, functioning mind and body.
Cathy--lives with DH(severe CHF/lung disease,pacemaker, epilepsy), DS18(bipolar,ADD,LD), DD12(astonishingly normal), and DS10(Pallister-Killian syndrome, epilepsy, vision & hearing loss).
Even our dog and two gerbils have epilepsy.
LindsayDunn228
<font color=teal>Quite a hunk of man, isn't he???<
- Joined
- Dec 21, 2004
I agree with you 100% on that point!Forevryoung said:Children dont fit into boxes.
Society today thinks that any child not in the "gifted" program in the elementary schoolds needs services to help them improve to that "gifted" level; thus they need a reason for providing the services (aka a diagnosis) and thus it becomes very easy to label a child. I hate the fact that society consistantly tries to explain a child's behavior by labeling it.
DISoriented
Earning My Ears
- Joined
- Feb 25, 2005
Stacey2grls said:Our children still need their services. If I could I would eat my own hand off to make my daughter "normal." As time goes on she tends to stick out more, and I cringe inside everytime I know she is being watched or stared at. I also lay awake at night worrying about every possible scenario of her future. I would do anything to make things right for her.
So very true for me. Our kids are both 5. I also live on LI (South Shore). Maybe we can get together sometime. I feel so alone in this. I worry a lot also. When he gets rejected, I take it so personally. My heart breaks. I never thought I'd be experiencing grade school at my age. PM me if you'd like.DISoriented
Earning My Ears
- Joined
- Feb 25, 2005
twojo21 said:
But what you're describing is a systemic problem. This is the way it is set up. The county and school district requires a dx in order to provide services. I understand your concern with MDs that dx kids with something only to get through the red tape. But that doesn't negate the fact that these kids do need help. Call it whatever you (general you) want. The bottom line is that a child needs help. It's a slippery slope when you start trying to determine who is more worthy of the assistance when you say:
I'd rather the system be more inclusive rather than let any child fall through the cracks.
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