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Old 01-26-2013, 08:48 PM   #46
AddictedtoDoleWhip
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Originally Posted by FortForever View Post
While people have been busy criticizing my take on Aspergers, I have also wondered about theirs. Really, you wouldn't change anything about your child including Aspergers? You wouldn't take away the pain for them? The feeling of not belonging? The hurtful comments and actions of people who don't understand?

You wouldn't make their lives easier if you could? Well THAT is something I don't understand. Don't you love your children? Don't you want your children to have an easier, less painful life? Why would you embrace something that makes life hard for your children? If you could wave a magic wand and make them see things the way the rest of us do, you wouldn't do that for them?

Yes, I know that Aspergers cannot be cured. I am just reacting to the several statements on this thread that said they wouldn't change anything about their child, including Aspergers. It baffles me.
Well lets say that you can change or get rid of your child's Asperger's, how do you know he will be a better person or better off? You don't know how his life would be, you may think it would be different but it may not be and he could still be quite rude. Everyone feels like they do not belong at one point or another, granted sometimes it's felt more often than not people have been in that position before. Eventually people find their niche, or they just stop caring about trying to belong to a certain group and is that so bad? It's hard, yes, but do I think it's the absolute worst thing in the world? No.

Just because people don't view Asperger's/Autsim as the worst thing in the world doesn't mean they don't love them. It's those parents I have found that don't have this woe is me attitude, because it sounds like you are feeling more sorry for yourself than you are for your child. I'm sorry your child isn't what you want him to be, but to wish him to be someone else when he hasn't done anything completely heinous makes me feel very sorry for him. And I am sorry but not everyone in the NT world see's things the exact same way, even if you want to believe that they don't. Yes, there are social norms that ASD people tend to gloss over and yes there are not so many fun moments for everyone all around, but I have learned that even NT have their off days and that's okay.

I'm sorry that you are unhappy with the way things are for you, I hope that one day you find peace.

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Old 01-26-2013, 09:10 PM   #47
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Yes, I know that Aspergers cannot be cured. I am just reacting to the several statements on this thread that said they wouldn't change anything about their child, including Aspergers. It baffles me.
I've thought about this quite a bit and I think it's because it's such a part of who my daughter is-it's not like a layer you can peel away-it is a part of her personality-of who she is. I don't think you could ever "cure" AS because it is a part of their genes-intrinsic in their basic makeup---you cannot separate the part of your child that is autistic and have something else left over. I feel like people who wish their children could be "cured" are wishing for another child-one that doesn't have autism. Now I understand wanting to make things better-getting therapies, better nutrition, etc but I just can't imagine my daughter not being who she is, quirks and all.

And I didn't mean to imply your child had a co-morbid, I was just trying to explain that some of the negative portrayals of AS in the media & such-there is usually something else going on. And co-morbids are common with autism.
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Old 01-26-2013, 09:20 PM   #48
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I do not feel sorry for myself. I do not sit around all day wishing for things to be different. I did not initiate the subject of taking away Aspergers. I purely reacted to the statement of others (who are clearly trying to convince themselves) that they embrace their child's disability and would not change it.

THIS THREAD IS ABOUT ASPERGERS! THIS IS ONLY A SMALL ASPECT OF OUR LIVES, NOT THE ENTIRE THING.

Denial is every bit as ugly as Aspergers. To those of you who think your children don't know there is anything different about them. Ummm, yes they do. And by being in denial about it, you are teaching them that you are ashamed of it. Poor kids.

I am so done with this conversation. You just can't communicate with people who wish to be dense.
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Old 01-26-2013, 09:27 PM   #49
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You seem to have a great deal of hatred for your child, I mean, "impossible to live with", "thank God he works all the time"? What kind of person are you?
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Old 01-26-2013, 09:56 PM   #50
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Fortforever,
I do think you have a right to your opinion, but just by reading your posts, it seems to me that you have alot of anger. Your first post stated, that your son will push into people and not even apologize, he sounds angry as well. You also say that your son and you "hate aspergers" and it seems that that hatred has made you bitter and perhaps has frustrated your son and has not helped him with this "disability". I know raising a child with challenges can be frustrating and cause some to be resentful but I think it would beneficial to you and your son to let go of some of that anger. I wish you and your son well.
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Old 01-26-2013, 10:16 PM   #51
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I am an aspie adult. Aspergers is as much a part of me as the color of my eyes or my gender. It would be impossible to choose which parts of my personality come from the way I am wired and which have come from the life I have lived. Thank goodness my parents never considered me or anything about me to be such a nasty, ugly, destructive thing. Goodness knows I don't feel like a victim of anything.

To the OP... no matter what "label" your child does or does not receive, who he is as a person does not change. Everything you love about him will still be there, and the challenges he faced before a diagnosis will not go away. If he does get a diagnosis, then the upshot is potentially having programs and services made available to him that were not previously an option. He may surprise you. Kids have a way of defying expectations when they don't know they're limited. Best of luck to you and your family.
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Old 01-27-2013, 05:53 AM   #52
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Fort Forever and everyone else,
First please be as considerate as possible when expressing your opinions, everyone's experiance is different especially those with children from an older generation.

Fort Forever,
Perhaps this will help you to understand why your post was perceived as so insulting to others who perceive Apsergers different from you. If you have posted "for my child Aspergers is an ugly condition and a nightmare, because my child looks normal with high intelligence and people expect him to act normal" everyone would have understood and been supportive.

Everyone,
Let's remember that all of us have bits and pieces of the genetics, so often take thing "differently" so let be as supportive as possible, even when we need to express ourselves about someone else's statements that impact us negatively.

Fort Forever,
Since you have used KK you must be relatively close to me, so if I can every help let me know by PM, since our kids are lifelong learners, and it sounds from your brief description that your child is still "angry" which is an understandable phase for our kids due to the amount of discrimination and abuse they take form society, but it is a phase that with full self-awareness they can get though and remove that portion of the debilitating impact that can exists form being Aspergers in an NT world

Thanks

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Old 01-27-2013, 06:27 AM   #53
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You seem to have a great deal of hatred for your child, I mean, "impossible to live with", "thank God he works all the time"? What kind of person are you?
What a nasty, cruel thing to say to someone who is struggling with a very difficult situation. It's likely a good deal of her anger stems from the lack of support and the hostile attitude she has received from people like you. I'm sure she has encountered this many times over the years. Nothing like kicking someone when they're down. Very typical in the neurodiversity community. Anyone who wants a better life for their child must hate that child.
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Old 01-27-2013, 07:22 AM   #54
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What a nasty, cruel thing to say to someone who is struggling with a very difficult situation. It's likely a good deal of her anger stems from the lack of support and the hostile attitude she has received from people like you. I'm sure she has encountered this many times over the years. Nothing like kicking someone when they're down. Very typical in the neurodiversity community. Anyone who wants a better life for their child must hate that child.
How is saying that any nastier than saying that you hate part of your child and teaching your child to hate themself instead of teaching them to work with the body and brain they were given? It is nasty and cruel to autistic and aspie adults to say that we're ugly and damaged and victims. It's a nasty thing to say about kids too. People treat parents of kids on the spectrum like they can do no wrong, when what they're saying is really really harmful. It is harmful to teach your child to hate part of themself and nothing will convince me otherwise. I encounter people telling me that I'm broken and that it's natural for my parents to hate something that has shaped who I am, my brain and my personality. I'm taught that's its normal for my parents to be ashamed of me and teach me to hate and be ashamed of myself. How is that not nasty and cruel? Isn't there enough hate in the world without teaching more of it?
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Old 01-27-2013, 07:59 AM   #55
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The person who needs the most understanding and support is the person with AS. They are the person who lives with the sensory overload and in a world that is not wired for people like them. I know that we, as their families, have to deal with a lot. We've lived with the meltdowns, the frustrations, the obsessions and all the rest. But, what we're handling is a shadow of the stress that those who have AS have to live with.

I see my role, as a parent, to support, love and try to help DS live in the typical world. We've done (and continue to do) ABA, social skills groups, sensory therapy. It's not about changing him. It's about trying to give him the skills he'll need to cope. IMO, it is not supportive or helpful to see him as a victim of a nightmarish, ugly disability. I don't think many people with AS or any other disability would appreciate that.

To the OP: my DS is a lot of hard work. He's constantly testing, always on the go, and frequently exhausting. He's also very loving, smart and consistently surprising us. He loves math, WDW and DCL, swimming and karate. He's our kid, and he's kind of great. My advice, if you want it, and if your DS is diagnosed with AS, is to remember that he's the same child he's always been. If anything, a diagnosis might help you understand certain habits and behaviors, and give you different strategies for handling them, especially if they are being caused by sensory issues. Good luck, and I hope your family, and especially your DS gets the help you need.
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Old 01-27-2013, 08:06 AM   #56
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How is saying that any nastier than saying that you hate part of your child and teaching your child to hate themself instead of teaching them to work with the body and brain they were given? It is nasty and cruel to autistic and aspie adults to say that we're ugly and damaged and victims. It's a nasty thing to say about kids too. People treat parents of kids on the spectrum like they can do no wrong, when what they're saying is really really harmful. It is harmful to teach your child to hate part of themself and nothing will convince me otherwise. I encounter people telling me that I'm broken and that it's natural for my parents to hate something that has shaped who I am, my brain and my personality. I'm taught that's its normal for my parents to be ashamed of me and teach me to hate and be ashamed of myself. How is that not nasty and cruel? Isn't there enough hate in the world without teaching more of it?
She never said any of those things about her child, only about the syndrome. YOU are interpreting that to believe she hates her child and that she has taught him to hate himself. It is only the OPINION of some that Asperger's is part of a person's personality. An opinion, nothing more. If you can't separate the condition from the person and that's how you like to deal with it, then fine, but it is not the viewpoint of many other people, and you need to respect that without accusing the person of hating their child.

My own daughter says she hates having autism. She wasn't taught to hate herself, and she doesn't hate herself. I allow her to express her feelings while teaching her how to deal with something she didn't ask for. I don't try to tell her it's wonderful when she feels differently. That would be disrespectful of her feelings. It is NO different than her hating her mitochondrial disorder or insulin resistance or cerebral folate deficiency. She knows how all of these conditions, including autism, affect her life. She would be happy to get rid of all of them if she could. These "quirks" of autism everyone talks about, for her are just OCD and anxiety. Who wouldn't get rid of those if they could?

Now here is an ethical question. As we treat her underlying medical conditions, her "autism" is not what it used to be. Should I stop treating these very serious medical issues? Cerebral folate deficiency can cause seizures, and she was actually having seizures before it was diagnosed, so I'm kind of afraid to NOT treat it. However, treating her medical issues lessons the autistic behaviors. Should we just stop treating for fear of losing this condition called autism which is supposedly part of her personality?
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Old 01-27-2013, 10:32 AM   #57
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Now here is an ethical question. As we treat her underlying medical conditions, her "autism" is not what it used to be. Should I stop treating these very serious medical issues? Cerebral folate deficiency can cause seizures, and she was actually having seizures before it was diagnosed, so I'm kind of afraid to NOT treat it. However, treating her medical issues lessons the autistic behaviors. Should we just stop treating for fear of losing this condition called autism which is supposedly part of her personality?
I don't know you or your DD, but based on my own DS, if he's stressed or not feeling well, we see more negative behaviors. When he's healthy and happy, we don't see them as much. But, decreased negative behaviors doesn't mean the way his brain is wired has changed. He still has Aspergers Syndrome.

I'm glad you and your DD have identified some the medical issues that were causing her distress.
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Old 01-27-2013, 11:36 AM   #58
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I knew this was going to turn into a bash each other thread before it even started. Wow.

Anyhow, when thinking of how stressed out people get when learning they may be diagnosed with something such as autism or just about any other type of health issue be it mental, emotional, physical, etc.

What does a diagnosis do? It doesn't change the person. The diagnosis can be very helpful (as long as its not a misdiagnosis - my personal example would be a doctor saying I had anxiety and possible asthma and prescribed antidepressants and an inhaler when my actual problem was my thyroid and that was never addressed until I saw a cardiologist because it was causing cardiac issues.. this was my 3rd misdx due to this.. first was cardiac when I was 19, put on heart meds, found out I was pregnant -they assumed it was all due to pregnancy, then the above)

Sorry to get off topic. The OP wanted to know about each of your and your personal experiences. If she is new to AS/AD, then she needed to be reassured in sort of way. Not that you need to sugar coat anything but just that her child, if diagnosed, isn't somehow going to be a different person.

To OP: Whether your child is diagnosed or not, he will still be your child. Only difference is, now you can [hopefully] get the assistance that he's been possibly lacking. That's a good thing, right?? You life may get a lot busier and even hectic at times, but that would have happened anyway. As children age, their needs change. All have different attitudes, different likes/dislikes, quirks, skills (some academic, some sports, etc). ALL people (typical/nontypical) are different... some just more so than others.

Honestly, I have 3 kids...

My oldest (13yr old boy) has ADHD/ODD - it was a 'nightmare' when he was little (climbed on top of a 3 story apt building when he was 4, would run out of his school, store, etc into the parking lot from 4 up until about 8yrs old.. he pooped his pants until 8(it was always on purpose)... but he also had anxiety and depression due to a lot of things going on around him. We moved a lot, he switched schools, his dad is in the army and was deployed almost from the day we moved back to the US in 2002 (he was 2 at the time - this is when his behavior took a major turn for the worse). However, he's a very kind, sweet, considerate young man that has anger outbursts when his anxiety gets too high. Visiting with a psychologist seemed to help him with his anger outbursts. He just needed a place to be able to let out his feelings or aggression. All people do this differently. One child that I keep in the afternoons does this by writing and drawing his feelings.
Now, at 13 he still has all the same issues, but they are less and he's learned over time to known when they are flaring up. Sometimes he has to stand to play a board game with us or stand to do work at school. We've also noticed, for him, diet and nutrition (adding certain vits/mins) play a huge role. I can tell, for example, if he's eaten junk at school. Unfortunately, the school took out the salad bar and that used to be what he ate almost everyday. Now he's eating what they serve in the hot line and his ADHD/ODD is flaring up more frequently.

My daughter (11yrs old, middle child), is what you would call NT. She's definitely got her own unique personality and quirks. She's had digestive issues which has led her to be chronically underweight. Also has scoliosis. We believe this was the major contributing factor to her digestive issues. A wonderful chiropractor has just about succeeded to 'straightening her out' LOL. Anyhow, very little foot/leg/back pain, almost no digestion (constipation) issues and her last visit to Vandy showed her spine is near perfect!! Since puberty hit, she's turning into a sassy monster at times, but what do you expect? Oh I forgot.. she has a ton of med & food allergies.

My little guy (4yr old) - he's being referred for AS/AD eval. I've always known he was different, BUT its because I had experience and knew what to look for, etc. If he's officially diagnosed then it won't change HIM. He's the sweetest kid I know. His co-morbidities are more concern for me... Seizures, sleep apnea, sensory processing disorder, lactose intolerance, digestion issues and who knows what else.

I think the biggest problems (now please correct me if I'm wrong - but no bashing, that's not what this thread was about) are the co-morbids. I was just reading an article the other day about the prevalence of seizures as a co-morbid.... ever heard of absent seizures for instance... there are some types of neurological disruptions or even seizures that can be viewed as 'typical autistic behaviors'.

Ok, back to MY main topic. Please stop bashing each other for their personal experiences. Could just be that the negative experiences are more recent and still a raw spot that needs some reassurance, some kind words, understanding and hugs??? If you were having a rough time with things would you rather people bash you or reach out to you??? We all get so caught up in caring for our children that we often forget to take care of ourselves. I'm definitely one of those people, esp since I'm also a single mom and their dads are basically absent (one by choice, the other by army orders-lives in another country). I really hope all of you can find support within your local communities, church, mom's group, etc. Boards like this are great, but having someone you can lean on in real life is even better sometimes
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Old 01-27-2013, 12:32 PM   #59
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Well said Cierese.
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Old 01-27-2013, 02:11 PM   #60
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Here is a list of some of the most common comorbidities. I'm sure many of you have had experience with some of these, and I assume these probably cause a huge amount of the problems and/or frustrations. I know a lot of these are a big problem in our home. I've also taken care of kids whose Drs/parents just lumped these issues in and said it was 'because he/she has autism' and instead of trying to treat the comorbities assumed it was 'typical autistic behavior'.

• Gastrointestinal disorders
• Sensory problems
• Seizures and epilepsy
• Intellectual disability
• Fragile X syndrome
• ADHD
• Bipolar disorder
• Obsessive compulsive disorder
• Tourette syndrome
• General anxiety disorder
• Tuberous sclerosis
• Clinical depression
• Visual problems.
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