Oprah - Autism topic - Sep18/07 - Page 3 - Mothering Forums

Forum Jump: 
Reply
 
Thread Tools
#61 of 79 Old 09-21-2007, 12:53 AM
 
wytchywoman's Avatar
 
Join Date: Nov 2006
Location: The Room of Requirement
Posts: 3,031
Mentioned: 0 Post(s)
Tagged: 0 Thread(s)
Quoted: 0 Post(s)
Quote:
Originally Posted by Kristine233 View Post
Can I be your friend? : lol

I'm another mama who we're pretty sure is AS as well but no official dx. I feel like I'm my child's biggest advocate (as it should be) but that all these "political/influencial" people just look at my child (or any child with Autism) as another piece of ammo for their cause and don't see him for who he is.

He's a child, he's my child.
Absolutely you can be my friend.: I agree completely with what you said. They have an agenda and they are using these people to further it along and it's just plain sick.

M : proud mama to B (16) : and G (8) and : x 2 :
wytchywoman is offline  
#62 of 79 Old 09-21-2007, 01:01 AM
 
wytchywoman's Avatar
 
Join Date: Nov 2006
Location: The Room of Requirement
Posts: 3,031
Mentioned: 0 Post(s)
Tagged: 0 Thread(s)
Quoted: 0 Post(s)
Quote:
Originally Posted by Brigianna View Post
I'm very flattered. Truly.
:

M : proud mama to B (16) : and G (8) and : x 2 :
wytchywoman is offline  
#63 of 79 Old 09-21-2007, 01:15 AM
 
Brigianna's Avatar
 
Join Date: Mar 2006
Location: who knows?
Posts: 9,522
Mentioned: 0 Post(s)
Tagged: 0 Thread(s)
Quoted: 0 Post(s)
Incidentally, I wanted to mention, y'all have a standing invitation to e-mail me about ASC issues or whatever else. I'm glad to help wherever I can.
Brigianna is offline  
#64 of 79 Old 09-21-2007, 01:17 AM
 
Roar's Avatar
 
Join Date: May 2006
Posts: 4,540
Mentioned: 0 Post(s)
Tagged: 0 Thread(s)
Quoted: 0 Post(s)
Quote:
Originally Posted by wytchywoman View Post
I don't believe in the concept of normal, I don't think there is such a thing. Why is my son considered abnormal? Because he can't make eye contact? because he echos back what he hears? Because he can't do things that the AAP and socity says he should be able to by age 6? Am I abnormal because I don't like making eye contact and I would rather eat buckets of shards of broken glass rather than go on a date or to a party? These are all things that society considers normal, however for my son and I they are a routine part of our lives and are only problematic when these behaviors are demanded of us by someone who insists we behave in a "normal" fashion.
Okay, that's your reality. I'm totally willing to accept at face value that this is the way you feel about your life and this is a set of decisions you feel comfortable with.

At the same time I'm the parent of a kid who was able to express and express clearly a sense of internal dissatisfaction that had nothing to do with anyone else's insistence that he be a different way or not accept himself. It can be PAINFUL to have difficulties with sensory regulation. Some folks who may be by nature highly introverted or wired to be largely disinterested in the outside world, may feel great to retreat into their own home or world and not be bothered that they can't go beyond that without discomfort. But, for some the distance between what their bodies will allow them to do and what they wish to do is large and painful. There were things our son strongly wanted to be able to do that he was unable to do prior to getting therapy and help. Getting him help like OT hasn't fundamentally changed the person he is. It has instead made him far more comfortable and happy in his own body. It has allowed him to connect to other people and experiences that have great meaning to him. I can't imagine denying a child that option to feel more comfortable because someone says they should feel that way already.
Roar is offline  
#65 of 79 Old 09-21-2007, 01:33 AM
 
Kristine233's Avatar
 
Join Date: Jul 2003
Location: Way Northern MN
Posts: 4,154
Mentioned: 0 Post(s)
Tagged: 0 Thread(s)
Quoted: 0 Post(s)
Quote:
Originally Posted by Roar View Post
Okay, that's your reality. I'm totally willing to accept at face value that this is the way you feel about your life and this is a set of decisions you feel comfortable with.

At the same time I'm the parent of a kid who was able to express and express clearly a sense of internal dissatisfaction that had nothing to do with anyone else's insistence that he be a different way or not accept himself. It can be PAINFUL to have difficulties with sensory regulation. Some folks who may be by nature highly introverted or wired to be largely disinterested in the outside world, may feel great to retreat into their own home or world and not be bothered that they can't go beyond that without discomfort. But, for some the distance between what their bodies will allow them to do and what they wish to do is large and painful. There were things our son strongly wanted to be able to do that he was unable to do prior to getting therapy and help. Getting him help like OT hasn't fundamentally changed the person he is. It has instead made him far more comfortable and happy in his own body. It has allowed him to connect to other people and experiences that have great meaning to him. I can't imagine denying a child that option to feel more comfortable because someone says they should feel that way already.
You made the choice that is working for your family. You are reacting to your child's needs. There is nothing wrong with that. The moms that are "against a cure" are not saying they are against intervention. I think the point is that children should be allowed to be who they are and do what is best for them and not forced into a mold they don't want to be in just because society says they should be. If that means OT or diets etc to fulfill your child's needs, then that is what it should be for them.

I don't want to "cure" my child, but he still gets OT twice a week, ST once a week, and special resources at school daily. Why? Because its what we do for him to help him with his goals, what he wants to do and help him be who he is. Not to make him "fit in", only allow him to interact and integrate on a level that is appropriate and comfortable for him. If, at any time, he decided he no longer wanted to attend OT etc, we'd stop. Of course, at 6 (or in the case of non-verbal kids) he is not always able to express exactly what he wants which leaves us, as parents, to interpret. But I think most parents have a pretty good idea what their children want and understand them and their needs. Thats the key, their, them, not us.

Example: seeing my child struggle with social interactions and seeing the look on his face that says he WANTS to interact but doesn't know how. He comes to me and you can see the feeling of defeat on him. After seeing this repeatedly I can safely assume he wants help in this area, he is coming back to me each time and looking for my support. We start working with a group that works with kids with social issues and he thrives, loves it and is starting to be able to initiate social interaction. (not always productive but its a huge step!) Its an intervention, not a cure, and in our individual child's best interest. Not because its what he "should" be doing, but rather what he wants to do. Make sense?

Mom to Joscelyne 14, Andrew 12, and Mackenzie 10 and wife to Nate.
Kristine233 is offline  
#66 of 79 Old 09-21-2007, 04:44 AM
 
momoftworedheads's Avatar
 
Join Date: Mar 2003
Posts: 2,230
Mentioned: 0 Post(s)
Tagged: 0 Thread(s)
Quoted: 0 Post(s)
Quote:
Originally Posted by Kitsune6 View Post
there's a thread about it on the vax board.
I had to comment because my boy is intact and had the mmr spread out and is still on the spectrum

I am right here with you. My son was breastfed until he was 15 months old, not circed, spread out MMR, had to order 3 vax'es and still has a Dx of Autism. My middle son did not have MMR until later and he also is on the Spectrum.

I do not like mainstream TV-so I did not watch Oprah-never do!

Take care!

Jen, mama to  (M-13, N- 10, C- 8 rainbow1284.gif J- 3.5, and rainbow1284.gifJ -2, angel3.gifA (10/4/07) and 3 early losses)
We are expecting baby #7 in November 2013

momoftworedheads is offline  
#67 of 79 Old 09-21-2007, 07:21 AM
 
meowee's Avatar
 
Join Date: Jul 2004
Posts: 6,013
Mentioned: 0 Post(s)
Tagged: 0 Thread(s)
Quoted: 0 Post(s)
I have a 2 year old who was just diagnosed with PDD (if anyone rememebrs my other threads, yes, she was finally diagnosed). She is pretty much nonverbal and non communicative. But around 18 months, she did suddenly start talking (not much, but a lot for her). Then she suddenly went silent, and said nothing for 2 months. At that point she started using one of 3 words on rare occasion.

If she had been vaxed at 18 months (as many kids are) I'd be sitting here convinced she was vaccine injured. But she wasn't vaxed. It's actually very common for autistic children to show signs of normal development only to suddenly halt. And because so many vaccines are given during infancy/ toddlerhood, it's so easy to blame the vaccines.

And looking at non-vaxed communities like the Amish doesn't really tell you much. Because autism is genetic, it makes sense that a closed genetic community like the Amish would either show either a lot, or very little signs of autism in its community-- either the genetic carriers are there, or they aren't.

About the "separate world" statement, I have no problem with that. I have AS and I definitely live in a separate world.
meowee is offline  
#68 of 79 Old 09-21-2007, 07:22 AM
 
Anna V's Avatar
 
Join Date: Jan 2007
Posts: 68
Mentioned: 0 Post(s)
Tagged: 0 Thread(s)
Quoted: 0 Post(s)
Son number one was breastfed until he was 3, no vaccinations at all. Son number 2 was breastfed until he was 4.5 and no vaccinations either. Both are on the spectrum, son number 2 much more severely than his elder sibling.

I'm now seriously considering vaccination for both of them as the research just isn't supporting the autism-vaccine hypothesis now IMO. They're 10 and 14 and neither of them obliged me by catching the common childhood diseases so are utterly unprotected and mumps and measles in an older child do worry me.
Anna V is offline  
#69 of 79 Old 09-21-2007, 08:21 AM
 
Finch's Avatar
 
Join Date: Mar 2005
Location: NC!
Posts: 9,522
Mentioned: 0 Post(s)
Tagged: 0 Thread(s)
Quoted: 0 Post(s)
Quote:
Originally Posted by Kristine233 View Post
The moms that are "against a cure" are not saying they are against intervention.
This is the crux of my stance against the curebie hysteria.

My son doesn't need a cure, and quite frankly, autism isn't a "cureable" thing any more than other genetic conditions are "cureable."

BUT...that doesn't mean I am opposed to getting him therapies that will help him be more comfortable in his own skin, be more comfortable in this NT world of ours, and be more comfortable with the constant barrage of NT sensory input and NT demands that are made of him in everyday life. I do not want to make him "not autistic." I want to help him be an autistic person who can cope with his surroundings and cope with the NT world he is forced to live in. That's it.

Okay, back to my cave with my 10 foot pole.
Finch is offline  
#70 of 79 Old 09-21-2007, 09:37 AM
 
Kristine233's Avatar
 
Join Date: Jul 2003
Location: Way Northern MN
Posts: 4,154
Mentioned: 0 Post(s)
Tagged: 0 Thread(s)
Quoted: 0 Post(s)
Quote:
Originally Posted by Finch View Post
This is the crux of my stance against the curebie hysteria.

My son doesn't need a cure, and quite frankly, autism isn't a "cureable" thing any more than other genetic conditions are "cureable."

BUT...that doesn't mean I am opposed to getting him therapies that will help him be more comfortable in his own skin, be more comfortable in this NT world of ours, and be more comfortable with the constant barrage of NT sensory input and NT demands that are made of him in everyday life. I do not want to make him "not autistic." I want to help him be an autistic person who can cope with his surroundings and cope with the NT world he is forced to live in. That's it.

Okay, back to my cave with my 10 foot pole.
Exactly

Mom to Joscelyne 14, Andrew 12, and Mackenzie 10 and wife to Nate.
Kristine233 is offline  
#71 of 79 Old 09-21-2007, 10:43 AM
 
wytchywoman's Avatar
 
Join Date: Nov 2006
Location: The Room of Requirement
Posts: 3,031
Mentioned: 0 Post(s)
Tagged: 0 Thread(s)
Quoted: 0 Post(s)
I agree wholeheartedly with Finch and Kristine. I also have my son in OT, speech and even limited amounts of ABA (gasp) (for academic purposes : ). To me these therapies are not cures, they were never designed to be. I have him participate in these therapies because a) he likes them and they are fun for him b) they increase his quality of life.
Gabe also has severe SPD so I can relate to what Roar said, I understand as a mother how hard it is to watch your kid be anxious and afraid of what is considered to be normal sensory input. I am actually contemplating having Gabe complete AIT therapy to help with his high anxiety levels due to auditory sensory input. Once again this is not a cure and I am not expecting one, but if it can ease up some of his anxiety and physical discomfort than why not? I don't think anyone here is suggesting we all just sit back and do nothing. Our kids need to be able to function and these therapies help them do that. I am just fed up with ALL the mainstream media's attention and ALL of societys resources being thrown at finding a cure. How about allocating some attention and resources to helping those with autism who feel no need to be non-autistic and just need a little bit of help now and then?KWIM?

M : proud mama to B (16) : and G (8) and : x 2 :
wytchywoman is offline  
#72 of 79 Old 09-21-2007, 10:51 AM
 
peekyboo's Avatar
 
Join Date: Mar 2005
Location: crocheting a new tinfoil hat
Posts: 2,042
Mentioned: 0 Post(s)
Tagged: 0 Thread(s)
Quoted: 0 Post(s)
Quote:
I am just fed up with ALL the mainstream media's attention and ALL of societys resources being thrown at finding a cure. How about allocating some attention and resources to helping those with autism who feel no need to be non-autistic and just need a little bit of help now and then?KWIM?

You're so smart

Actually, that IS a good idea. Why does it all have to go to researching a cure that may never be found? Why can't some of it go for helping those right now, making therapies more affordable, making schools more equipped to deal with these kids?
peekyboo is offline  
#73 of 79 Old 09-21-2007, 02:08 PM
 
mamarhu's Avatar
 
Join Date: Sep 2004
Location: dining at the restaurant at the end of the universe
Posts: 3,078
Mentioned: 3 Post(s)
Tagged: 0 Thread(s)
Quoted: 11 Post(s)
Both of my parents (born before 1920) would have been diagnosed autistic had they been born today. However, it manifested quite differently with each of them. My father turned out to be a successful eccentric inventor (think of the Dad in the 1st Cheaper By the Dozen, or Chitty Chitty Bang Bang), spoke at least 6 languages, and was a musical prodigy as a kid. But he got kicked out of school and fired from every job he ever had.

Mom, on the other hand, had a harder time. She has all manner of learning disabilities, sensory stuff, and social differences. She was also deaf, so that influenced much of her life. She was (mis)diagnosed as mentally retarded as a child, but today has 2 Master's degrees. I have no clue if her life would have been different or better if she had grown up in an era of therapy. But she is highly successful and functional in her world.

While my son is autistic, I don't see him as disabled. I see my job as his parent is to help him find where he fits in the world, not change him to fit some spot I want him in. If he needs help in a particular aspect, I will help him find that help. An example is a reading tutor who specializes in dyslexia and autism. He said he wanted help learning to read (at age 10), so we found the person best suited to his particular needs, rather than trying to fit him into a school program. I doubt he will ever hold a job, but I can imagine him flourishing in a home business. Maybe carving wooden toys...this is my dream, not his, but it feels good to think that there is probably something he will be able to do.

I see it like the difference between choosing clothes that fit comfortably, versus dieting and exercising to become the shape of a particular outfit. Nothing inherently wrong with the latter, but we prefer the former.

Rhu - mother,grandmother,daughter,sister,friend-foster,adoptive,and biological;not necessarily in that order. Some of it's magic, some of it's tragic, but I had a good life all the way (Jimmy Buffet)

mamarhu is online now  
#74 of 79 Old 09-21-2007, 02:57 PM
 
Kristine233's Avatar
 
Join Date: Jul 2003
Location: Way Northern MN
Posts: 4,154
Mentioned: 0 Post(s)
Tagged: 0 Thread(s)
Quoted: 0 Post(s)
Quote:
Originally Posted by mamarhu View Post
I see it like the difference between choosing clothes that fit comfortably, versus dieting and exercising to become the shape of a particular outfit. Nothing inherently wrong with the latter, but we prefer the former.
That is a really good way of describing it, thank you for that!

Mom to Joscelyne 14, Andrew 12, and Mackenzie 10 and wife to Nate.
Kristine233 is offline  
#75 of 79 Old 09-21-2007, 03:43 PM
Banned
 
MillingNome's Avatar
 
Join Date: Nov 2005
Location: hunting in Gilead
Posts: 6,399
Mentioned: 0 Post(s)
Tagged: 0 Thread(s)
Quoted: 0 Post(s)
I missed it and don't plan on watching it.

A confession: I am tired of people calling me, emailing me, clipping articles for me and whatever on everything autism. I've od'ed. I have not visited this board for a few weeks and not because it's not a great resource and a cozy place to vent, cheer, and/or cry. I just wanted a break from thinking. I know ds is not neurotypical. The kid rocks (lol- not referring to stimming) and is doing pretty darn good figuring out how to find a place for himself in this crazy world.


I got three calls from people I hardly talk to telling me to hurry up and turn on Oprah. Yeah, yeah- I thanked them for thinking of me. I know they mean well.

Quote:
The moms that are "against a cure" are not saying they are against intervention.
:

Quote:
I see it like the difference between choosing clothes that fit comfortably, versus dieting and exercising to become the shape of a particular outfit. Nothing inherently wrong with the latter, but we prefer the former.
:
MillingNome is offline  
#76 of 79 Old 09-21-2007, 05:32 PM
 
WuWei's Avatar
 
Join Date: Oct 2005
Location: In the moment
Posts: 11,492
Mentioned: 0 Post(s)
Tagged: 0 Thread(s)
Quoted: 0 Post(s)
Quote:
I see my job as his parent is to help him find where he fits in the world, not change him to fit some spot I want him in.
I agree.

Quote:

I see it like the difference between choosing clothes that fit comfortably, versus dieting and exercising to become the shape of a particular outfit. Nothing inherently wrong with the latter, but we prefer the former.
My focus is on who decides.

Pat

I have a blog.
WuWei is offline  
#77 of 79 Old 09-21-2007, 05:36 PM
 
Individuation's Avatar
 
Join Date: Jul 2006
Location: Babymooning...
Posts: 1,975
Mentioned: 0 Post(s)
Tagged: 0 Thread(s)
Quoted: 0 Post(s)
Quote:
Originally Posted by WuWei View Post
I agree.

My focus is on who decides.

Pat
Shouldn't the person in question make the decision for themselves?
Individuation is offline  
#78 of 79 Old 09-22-2007, 03:24 PM
 
thorn's Avatar
 
Join Date: Dec 2004
Location: Alpharetta, GA
Posts: 2,422
Mentioned: 0 Post(s)
Tagged: 0 Thread(s)
Quoted: 0 Post(s)
Quote:
Originally Posted by WuWei View Post
During these discussions, I am always reminded of this essay by Anne Ohman, I Am What I Am.


Pat
wow. thank you for posting that.

Christine, mom to C(7.5) - E(5) - J(3) - B(10 mos)

Doula, childbirth educator, Co-leader of ICAN of Atlanta

 

"Never miss an opportunity to make others happy, even if you have to leave them alone in order to do it." ~Anonymous

thorn is offline  
#79 of 79 Old 09-22-2007, 04:12 PM
 
Empress's Avatar
 
Join Date: Jun 2002
Posts: 365
Mentioned: 0 Post(s)
Tagged: 0 Thread(s)
Quoted: 0 Post(s)
Quote:
Originally Posted by Individuation View Post
Shouldn't the person in question make the decision for themselves?
A young child can't fully make that decision, and parents have to weigh their child's current and future wishes.

My daughter has always been fascinated with her peers, so I have done my damndest to help her with her social skills and place her in respectful environments where she can explore social interactions. It hasn't been easy or anywhere near perfect, but I feel like that is what she needs. When she is older she can make the decision on how much social interaction, but for now I am balancing it.
Empress is offline  
Reply

Quick Reply
Message:
Drag and Drop File Upload
Drag files here to attach!
Upload Progress: 0
Options

Register Now

In order to be able to post messages on the Mothering Forums forums, you must first register.
Please enter your desired user name, your email address and other required details in the form below.
User Name:
If you do not want to register, fill this field only and the name will be used as user name for your post.
Password
Please enter a password for your user account. Note that passwords are case-sensitive.
Password:
Confirm Password:
Email Address
Please enter a valid email address for yourself.
Email Address:

Log-in

Human Verification

In order to verify that you are a human and not a spam bot, please enter the answer into the following box below based on the instructions contained in the graphic.



User Tag List

Thread Tools
Show Printable Version Show Printable Version
Email this Page Email this Page


Forum Jump: 

Posting Rules  
You may post new threads
You may post replies
You may not post attachments
You may not edit your posts

BB code is On
Smilies are On
[IMG] code is On
HTML code is Off
Trackbacks are On
Pingbacks are On
Refbacks are Off