|01-31-2013, 12:41 AM||#76|
Disney since Day 1
Join Date: Aug 2011
Location: Florida - Home of the Mouse
When he does this stuff (that I consider rude), he is not angry at all. This is where I am confused because the parents here do not seem to understand the most basic things about Aspergers. They do not act like us. Pushing past someone is not an act of anger in their world, it's normalcy.
Not engaging in conversation is not an act of defiance or anger. Once again, it's just Aspergers being Aspergers. I forced society's rules on him as a child. He KNOWS how to behave properly but has no chosen to say, "screw society, I'm doing things my way." Not saying this is good or bad, but I will say that it gets on my nerves.
I also did not teach my son to hate his disability. He's not stupid. He doesn't have to be taught that, he hates it quite easily on his own. He doesn't dwell on it. Neither do I. I am just reflecting on conversations we have had in the past.
Anyone who knows us in real life would never say the rude things the people on this board have. In my opinion, you have to be a bit on the angry side to attack strangers on the internet for sharing their personal feelings. A bit of projection going on, maybe?
My son does not have the help of any agency, social worker, placement counselor, etc. He got through college and got a job on his own. He has bought his own car, pays his own way, is responsible, kind, and caring. He turned out pretty good with Aspergers considering what a hateful, sucky mother I have been accused of being.
BUT, besides all the wonderful things about my son that I love him and am proud of him for, lurks the part that will drive me nuts at times. It's his Aspergers. It's the part of him I was posting about in my original post. I didn't feel all this background was necessary since the OP only wanted to know about life with Aspergers.
I felt I was in a unique position to offer insight into living with a young adult Aspergers son. I am glad he works as much as he does. When he was home, his quirks were worse. Now that he is busy, he has much less time to concentrate on them. I don't think it's terrible to be thankful for the time we have away from each other everyday. It saves both of our sanity.
When reading through all the new posts, I came across one telling me how I should have worded my statement in order to get the sympathy of the group. I wanted to thank you for your concern, but getting the sympathy of anyone was not my goal. My goal was to share my perspective as the parent of a young adult with Aspergers.
My thoughts and experiences do not requiring editing, as they are my own. They do not apply to anyone else. My feelings about Aspergers, the condition, are my own opinion. I stand by that. I have no bad feelings about the people who suffer with the condition.
|01-31-2013, 08:34 AM||#77|
It's like combining the teacups with a roller coaster
Join Date: Aug 1999
Location: Twin Cities area,Minnesota,USA
First - people need to keep in mind that communication over the Internet with just written words is a lot different than in person, face to face.
Words can be perceived much differently than the person who wrote them intended.
With just words, we are missing all the other social cues that come from being able to hear the 'speakers' tone of voice, facial expressions, body language, touch. People are much quicker to take offense to words read on the Internet than if the same words were said to them in person by the same person. One of the reasons is that lack of social cues, but another big reason is that when writing back and forth, there is not the immediate 'give and take' of verbal communication.
And, there is a lot less ability to clarify or validate that what you heard is what the writer meant to say.
From the standpoint of 'hating' a condition ( and, I am using 'condition' to mean pretty much anything that the majority of people don't have. It could be autism, Asperger's, diabetes, cerebral palsy, Down syndrome, etc.)
Most conditions have 2 extreme groups - people who are very upfront that they consider their condition (or child's condition) to be a big part of their identity and they would not change it even if they could.
In the other side, are the people who hate the condition, but not the person.
The main thing the 2 groups have in common are that neither understands the viewpoint of the other side, because it is so different than their own. There are a lot of people in the middle or who move from feeling to feeling, depending on the effects of their condition at the time.
Extreme words like "hate" "monster" tend to bring out extreme feelings. There is a man who wrote a story called Schyler's Monster about his family's journey with their daughter who has a brain malformation. Most of the things written here are tame compared to comments I have seen written to him on his blog. Even though he writes about his daughter with great love and understanding, people get stuck on the word "monster" and can't get past their own feelings to see what he has written.
SO, WITH KEEPING ALL THAT IN MIND, PLEASE BE KIND TO IN YOUR COMMENTS TO OTHERS.
I have a niece and nephew who both have Asperger's.
The nephew was considered "weird" from a very early age, but was not diagnosed with Asperger's until he got to about 6th grade. He did have other diagnoses, which did not seem to fit totally, but did explain some of his difficulties. He is still struggling to fi displace as a young adult.
My niece was diagnosed with ADD at a pretty young age, but got a diagnosis of Asperger's as an adult. When she was in a Psychology class in college, she took an Asperger's scale and I still remember the comments from friends and relatives when she posted on Facebook that she had pretty much gotten 100% on the scale. My favorite was "And, this surprises you in some way?"
She has a Bachelors and a Masters degree and a very good job that makes use of her skills.
So, 2 people in the same family at very different places.
I am going to move this to the disABILITIES Community Board at this time since it is not about WDW and will fit better there.
SueM in MN
Moderator of disABILITIES
Link to disABILITIES FAQs thread
Spaceship Earth: We are all passengers together.
Life is what happens to you when you're busy making other plans......John Lennon
Be a rainbow in someone else's cloud. Dr. Maya Angelou
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|02-03-2013, 02:14 PM||#78|
Join Date: Jan 2002
Location: South Florida & Motown
DO NOT trust a school psychologist. I've not met one yet that knew what they are doing! I'm sure there are a few out there, but these school psychs typically have little training in actual diagnosing. And they have NO accountability.
What the school is giving you is just a educational label, NOT a diagnosis.
|02-04-2013, 05:02 AM||#79|
Heading out now, another adventure
Have a good time, WDW is a magical place
Join Date: Mar 2008
I agree a clinical diagnosis is always worthwhile, although on average clinicians are no more competent in this area than school psychologists. Having worked with many families my experience is that when a school psychologist actually makes a call of ASD/Aspergers it is correct in a very high percentage of cases (at least 95+%), when the verification is done by a highly qualified clinical team specializing in ASD/Aspergers.
Good news is that within 2 years we should have a partial but reliable genetic scan available, so it will no longer be a question of if our kids have ASD genetics, but more importantly we can focus on the impact it has on them.
|02-04-2013, 08:34 AM||#80|
Join Date: Jan 2013
Location: Shawnee, Kansas
My school did a functional evaluation rather than a clinical diagnosis, and made a determination of areas where he needed support. The school did not label my son with anything; in fact, a comprehensive psychological evaluation deemed my son with ASD, but he did not fit the educational standard for being autistic/Aspergers. But it's ironic that I had to get the psychiatric evaluation before the school would grant the iep. Point being, what your child needs from an educational perspective may be vastly different from what he needs in terms of personal skills, counseling and even meds. It is imperative that the parent deal with those issues that are not within the school's purview.
|02-25-2013, 05:28 PM||#81|
Join Date: Apr 2002
I'll contribute, fwiw. My Aspergian son is not quite 16.
There are times when he frustrates me so much that I want to pull my hair out, or even slap him, but then, I hear that from the parents of neurotypical kids as well; teens being teens, they tend to be trying on adult nerves.
I'll state it up front: I am not a curebie. Do I wish that DS wasn't Aspergian? Sure, sometimes, particularly when he is being judgmental and refusing to see shades of grey. Am I looking for a cure? No, and I say that for one particular reason: I don't see Asperger's syndrome as a disease.
To me, Asperger's is simply a difference, albeit a large one. I guess that I look at Asperger's much the same way as I look at being left-handed or being gay. Once upon a time, either one of those things got you branded as not normal; as fatally flawed in society's eyes. My left-handed MIL got her knuckles rapped regularly for writing with her left hand, and was forced to use her right because it was "normal". Today we think nothing of left-handedness. The time is on the horizon when society as a whole will think there is nothing "off" about being gay, either; it just won't matter any more, and IMO, anyway, that is as it should be.
There once was a time when being "quirky" meant that people might have laughed at you or preferred not to socialize with you, but back then no one thought of those people as victims of a disease. Oddity and a lack of conventional manners was just accepted as one of those things, and the expectation was that people like that would find their niche somewhere and manage just fine in it. Asperger in some ways did these folks no favors; now some people treat that quirkiness as a disease. All evidence to the contrary, whenever the idea of disease is raised, with it comes the idea of contagion, and the segregation begins.
I don't think that my son's brain needs to be "fixed" -- he just needs guidance to learn certain things that happen to come without effort to other people. Other people can't see 400 turns of a maze in one glance, but he can -- does that make those other people a victim of something? He is bright, he can learn, and he has, but someone has to recognize what he doesn't know and help him to understand that these things have to be taken seriously if he is going to be a self-sufficient adult, even if it means learning to fake it. Some people need extra help to learn math -- my DS needs extra help to learn manners.
Is it infuriating sometimes to have to be that person who helps him understand? Oh, you bet, but part of me also wants to ask why it's so gosh-darned important that he say "excuse me" to every single person he brushes into as he works his way free of a crowd? Why do all those people have a right to get angry at or look down on someone who really has not done them any harm? Is if really that big a deal if he doesn't always say Thank You or Please? (FTR, at 15 DS now always says Please and Thank You at school or when dealing with businesses or doctors, etc. However, he does not say it at home with family; he knows we won't hold that against him.)
I don't like people who feel that parents should never voice frustration with the things that their kids do or don't do that makes their lives particularly difficult. We are parents, sure, but we are also human beings, and human beings get angry and frustrated, and sometimes the intensity of that can even trump love for a little while. IMO, it's OK to not like your kids sometimes.
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