i am very upset | Autism PDD
My grandmother told me something that sticks in my head right now "You have much too much to worry about with your boys that you don't have time to worry about what other people think of you". I was complaining to her about my MIL and I was saying that she doesn't like me and I don't know what I could have done to her.
So, you have a lot to worry about with your child, don't let other people bring you down.
The lady is probably not aware of other signs her child is having. There is no cure but they do out grow some sensory issues but for my kids they get new ones.Shell,
You are a very valuable member of this community. I really like reading your posts, and even if you were to come on here and just make a post about something I totally disagree with, I would't take it personally. It sounds like this woman may have felt attacked. Don't take it personally. She might have been pms'ing or just needed to vent some anger somewhere and you happened to be a convenient target because she knew she had an audience in you because you'd already replied to her post. Many hugs to you.
yeah...this is a tough one....on the one hand I can see where this woman wanted to believe that the gf/cf diet cured her child (and actually, I think it does work for some kids, don't know why for some and not all...) but I have found no success in it either with my dd. However, I can totally realte to what you're saying too because even though I would love nothing more than to hear my dd was "cured" I can't say I'd believe it. No one knows for sure what causes it, no one knows for sure what "cures" it ( in ALL cases) and frankly I'd be feeling worried that it was just a "phase". You know how the kids often PROgress and then seem to REgress? I don't know....... Or maybe in her child's case it wasn't actually autism but a neurological allergy to the casein and gluten that casued the symptoms (that's what I've read anyway.....)
Bottom line: she should not have treated you that way and continued to harass you online. We love you here Shell! I think you've always been very compassionate and have offered great advice.
i wa wrong then
was it wrong to be honest should i have lied i am confused
its like the question
does my bum look big in this
if it did i would say yes
i am really struggling with thoughts and trying to understand myself
shell
Shell,
She would of gotten many similiar responses if she posted the same thing here on this board I assure you....not because any of us are cruel or hurtful but realistic...and sensitive to claims of cures.
I am sooo sorry she spoke that way to you....having a child on the spectrum has made me so much more patient and non-judgemental to people~doesnt seem to be the same for this person:(
Some are blind to what they see as cured when others would indeed see issues...I know for all the recovered kids I have seen I have yet to see one totally without some quirks or issues...even in my own child has graduated out of ABA and private speech and academical years ahead peers...no behaviors or stims at all & I could very well proclaim "She is cured!" but I still see quirks and would never tell people she was cured.
Dont feel bad and remember what goes around comes around:)
(((HUGS))) Shelley
perhaps the years if childrens homes and shocks i dont know
i feel odd sorry everyone
thankyou everyone
i am very greatful
shell
Shell I'm very sorry you were treated that way. Some people only want to hear what they want to hear and react very rudely to people who say otherwise. I've read many posts of yours here and you are very helpful.
Wow, that was incredibly unkind of her!
I wouldn't get too upset about someone elses reaction online.. tones of intent and purpose can't necessarily be related to via keyboard. Obviously, cussing at someone is totally unnecessary, and I would report it to the moderator.
That is very sad and I feel so bad for youThat seems like a little too strong of a conviction, to swear at you.
People who are comfortable with their belief in something can tolerate opposing opinions and experiences.
I am sorry anyone in our position was so impolite.
do i come across has force ful or blatent
if i do i do not mean to
i am very confused with myself
i was as i saw it being nice
but it was not seen that way
those who know me no my fingers can go on with there selves but i never ever would hurt anybody knowing i had done so
thanks guys for your thoughts
shell
I am so sorry that you were treated in such a way. Some people like to believe that there is a cure for autism, well scientist say, THERE IS NOT! There may never be a cure, even if they ever find one (very unlikely) we won't be around to see it happen.Don't get me wrong, I wish there were a cure, but you know something, I LOVE MY SKYLAR JUST THE WAY HE IS AND WOULDN'T CHANGE HIM FOR ANYTHING IN THIS WORLD. We have our good days and we have our bad ones. But I wouldn't trade it for anything in the world. His disability could always be something far worse than autism.
I guess the people in that group also believe that a certain diet will cure cancer too?
Cheer up, I feel bad about the way you feel. But always remember, IT COULD BE A LOT WORSE!
PS. I do agree that the diet has some great effects on a lot of kids, but it is not a cure.
this is one of the replys
THere is a negative Nelly in every bunch, seems ours must be dear Shelly.
that's all the tme i'll take to comment on that.
but i feel like everyone is thinking the same thing to say something
so hurtful to some one she must be a f------ (deleted and changed for this forum\' idiot
You are entitled to your opinion and nothing warrants being sworn at, We are all adults just trying to survive this roller coaster and that person should come here and learn something from the beautiful people on this site, there is so much love and knowledge here, some of which we can not even get from our own families.
I am thankful for every one of you and Spectrummum I have utmost respect for you and your advice and caring way. No you do not come across as forceful or blatent, You come across as a parent just like the rest of us trying to find support and truth in this thing they call Autism. That is all most of us are looking for is Truth in a world that has very little answers to our questions. And it is mostly out of love for our children and all the children that are in the spectrum that we are here.
Sorry for going on but this just upsets me......And again a huge thanks to you and everyone here for your help and support!!
thankyou very much
i love this group and i know we are sailing in the ship thankyou
this as just been sent
to me grrrrrrrrrrrrr
And to Shell,
I consider that every sick child needs to be cured and that it is the
responsibility of a parent. The approach most are following here is: have I
done everything I can for my child?
Personally I want my child to become a happy and FREE individual. If he
wants to watch the washing machine spin and that makes him happy why
not...as long as he is able to make the choice of doing so (instead of
discussing a book with a friend for instance). I think my duty as a parent
is to give my child the chance to become independent, be able to take care
of himself. Who will look after him when I am not there anymore?
Institutions. ..
If a child has speech delay, aggressive behavior, suffers from isolation,
cannot cope with the world around him, is unable to read, write or
communicate properly, has sleeping troubles, stomach cramps...why not cure
him if you can? What do you think he would say if you were giving him the
choice? And how would you justify that you chose not to help him: That you
didnšt want to trouble him or yourself with a boring cure, too difficult,
too expensive, too risky, that you were afraid it might not work..that you
thought he was happy to live an assisted life (after all many people are) or
maybe that you would have to consider curing yourself. What is your
answer?Whether you have aspergers or not does not make any difference to me
Please share our joy when someone gets better or else stop mailing to this
group.
I donšt lie to myself and pretend autism is not a problem
People fully happy and at peace with their soul generally donšt get the
autism diagnosis.
"People fully happy and at peace with their soul generally donšt get the
autism diagnosis."
Are we allowed to say the word "bollocks" on this site?
A reason that many of us tread cautiously when in a situation where we might be "bursting the other person's bubble" is because there is a tendency for people to "shoot the messenger" when they hear something that they don't want to hear.
Please try not to take this too personally. This mom was probably euphoric at the thought of her child not being on the spectrum. It was probably the happiest day of her life. And you rained on her parade so she is lashing out at you. Yes, she was very unkind, and that kind of behavior is never appropriate. Hopefully when she settles down and gets some perspective she'll feel badly about the way she reacted. Clearly you had the best of intentions, but she is definitely not open to your thoughts on this subject. I would just let it go.
i offer any help and advice where ever i cani was on a group today and someone posted and said that her child had been reassessed and they told her her child was cured he did not have autism amymore and the miracle was the gf/cf diet
now i know a lot of people swear by this diet and i respect you for that i however dont but that is my opinion
i replyed saying i would be wary of anyone who said my child was cured
she replyed with a message saying i was rude and unkind and used a swear word
i was trying to help but seemed to fuel her anger
i told her i did want a cure for my children or myself she said i was f------ stupid
im very upset
shell
I haven't read most of the posts on this, but wanted to reply to the original poster. You were NOT out of line to post your true feelings. There are some kids who have allergies for whom a change in diet can make a HUGE difference. But there are NO double-blind scientific studies that show that any particular diet or alternative treatment can "cure" autism. Of course, that is not the point. The point is you were treated quite badly. My guess is that this mom is scared. Scared that the diet didn't REALLY cure her son's autism and that it's really still there. She doesn't want to consider for a SECOND that it might not be cured because then her OWN fears will surface. Time will tell with her son. She should never have responded to you in that manner, but the very fact that she did tells me that she knows, deep down, that her son is not actually "cured." Or at least those are her fears. I'm SO sorry she lashed out at you.
Mary,
I totally agree that the woman's response incredibly rude and unkind. It's never approrpiate to lash out at someone else like that. Unfortunately, there are many people who behave this way.
My post was in response to a later post in the thread where Shell asked whether it's ok to be honest or not. I hope I didn't come across as condoning that woman's behavior as that was not my intention.
There is no excuse for her to be so rude to you. I would be really upset too. Many hugs to you.
Mary
I AM SORRY THIS PERSON FELT THE NEED TO BE LIKE THAT TO YOU. i BELIEVE THERE IS NO CURE FOR AUTISM, (AS MUCH AS i WISH THERE WAS)....THE DIET i THINK HELPS SOME BUT NOT OTHERS..ISSUES EITHER GO AWAY OR FADE, BUT OTHERS COME INTO PLAY..tHE HARDEST THING i HAVE COME TO ACCEPT, AND i STILL DO NOT THINK I HAVE ACCEPPTED IT YET..IS THAT MY SON WILL ALWAYS HAVE A HARDER LIFE THAN OTHERS..AND THAT LADIES..BREAKS MY HEART...tHE HARDEST THING i HAVE COME TO ACCEPT, AND i STILL DO NOT THINK I HAVE ACCEPPTED IT YET..IS THAT MY SON WILL ALWAYS HAVE A HARDER LIFE THAN OTHERS..
[/QUOTE]
I cannot even begin to think about that.
Mary
I'm sorry that you were treated like that....she had no excuse to treat you like that 
....
I like reading your posts
Shell,
It's tough sometimes to figure out when to be honest, when to say nothing, and when to lie. It's so situational.
In this case, in hindsight, it probably would have been best to say nothing. If someone is euphoric because they've heard what they want to hear, odds are they are not interested in hearing anything to the contrary. It sounds like this woman was just sharing her news and not really looking for contradictory opinions. In that situation I would probably have kept quiet. However, if she had made a post like "my doctor said my daughter is cured, is that to good to be true and what do you all think" then I would have chimed in with my honest opinion, whether it was what she was hoping to hear or not.
When I think of the "does my bum look too big in this" question, that is situational too. If a girlfriend and I are shopping together and we are in the dressing room and she tries on a dress and asks me "does my butt look too big," and it did, I'd be honest. In this situation she hasn't bought the dress yet, and there are many options, and I think it's approproate to give honest feedback. However, if met that same girlfriend at a bar, and we were getting ready to go on a double date, and she was nervous about it, and she said "does my butt look too big" and it did, I would LIE LIKE A RUG and say "no, you look great." At that point it is too late for her to change, and she's nervous, and just looking for reassurance that she looks ok. In that case I would feel no guilt about lying to make her feel better.
I was at lunch at work the other day with 3 other women and they were going on and on about a situation at work (office gossipy stuff). They were all in agreement, but I felt very differently about the situation. I chose to say nothing. At one point in the conversation one of the women said "Kristy, you're awful quiet today" and I simply said "sorry, it was a long morning of meetings and I've still got work on the brain." I simply didn't think the situation was important enough to argue about, and I didn't sense they wanted a dissenting opinion, so I just kept my mouth shut.
There is no cut and dry formula for when to be honest, when to simply say nothing, and when to tell a while lie to make someone feel better.
Kristy, I agree with you that it was probably best to say quiet, especially when she was just sharing her good news. You give a good analogy about the big bum shopping thing too. That being said, there is NO excuse for this woman to lash out at Shell. Even if Shell said something which might be inappropriate for this particular thread, (and many people will disagree about this) she did not deserve to be treated like that.
Mary
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