dumb things people say to parents | Autism PDD
Most of the worst comments came from dear ol mom:
1) oh she is fine..she is just like you:)
2) ya know MR kids are so socialable..it would of been better to have that than autism
3) ya know instituitions can do amazing things with these kids
4) poor baby has to work (aba therapy) all day and that is not right!
5) well ya know she us lucky to be able to stay with you & DH till yall die..then I bet she will do just fine in group home at least she wont be in a instituition.
6) Mainstreamed kindergarten? Oh! I told you she would be just fine...Why dont you ever listen to me??
So pityful you just have to laugh & cry at the same time!
So whats their special powers?
I don't know how you do it. If my daughter behaved like that I would put her in an institution. ( this from someone who was supposed to be a good friend)
Well at least he's not mentally retarded(this from my own mother) and we have never had anything like this on ourside of the family. (cos both my kids are autistic and my mother despite doing the reading and attending a lecture doesn' realize that one of her sons has aspergers for sure!)
Well at least she's happy.
And all the usual that child needs a spanking....
Miracle of miracles one day in the shops when I was trying to distract the kids and keep them calm I had someone come up to me and say I was doing a good job. The compliment left me speechless. Liz
special powers ... tinka tinka tee!Well this one, if I did not know the speaker, would be construed as dumb ...
"WHO would want to label a child that way???"
Ummmmmm ... to get services to help them?
My special power would be to seal shut the mouth of the person with the inappropriate comments.
I think I have heard just about everything from
The reason he acts like that is because you allow him to and you have no parenting skills.
Well you know my dog is smarter than your child. (From his ex-OT)
He can't be autistic he looks normal.
From my family: You are making up the fact that he is autistic, autistic children don't play and don't talk. You always have to have something dramatic in life.
You know autism is all a ploy from the government to cover up how they have screwed up our children.
Plus many many more. ....
I think that some people should just think before they talk and if they haven't lived with it then don't comment on it.
The first thoughts that come to my mind are "shock and awe" - not only that random people make such comments, but so many of the most hurtful ones that I read here came from close family members.
(((((HUGS))))) to everyone.
I've never had anyone (yet) say anything awful to me. I find that most folks that I encounter are pretty kind and understanding. Often people are suprised and say things like "I wouldn't have guessed, he's doing so well" (the "doing so well" referring to whatever situation is happening at the time such as a birthday party, t-ball game, etc.) I then usually explain that he has a tougher time at school and in more stressful situations. People usually have questions. I've never been offended.
I have heard many of the one's posted too.
The dooziest I've heard is..
When we started a mainstream preschool and arrived in the playground one of the new staff was looking at my dd with a more of "what is that thing" look and then she turned to me and asked "How long have you been doing this for?" ... umm... I'm her mother. I think she forgot my dd had parents.
i also get the but he is so handsome thing all the time still. don't know what one has to do with the other. if your autistic you can't be handsome? i really doesn't bother me anymore. think people just don't know what to say. trying to say something nice. have been there a few times myself when i was shocked about something and said something stupid and wanted to kick myself.[QUOTE=col845]i also get the but he is so handsome thing all the time still. don't know what one has to do with the other. if your autistic you can't be handsome? i really doesn't bother me anymore. think people just don't know what to say. trying to say something nice. have been there a few times myself when i was shocked about something and said something stupid and wanted to kick myself. [/QUOTE]
Maybe, "why but?"
But as a terrible foot-in-mouther, I must admit, sometimes I just draw a blank!
Oh, I get the "but he LOOKS normal" comments ALL the time!!!! Are these kids supposed to "look" a certain way? I've had medical professionals and teachers make those statements to me, not just other parents.Bonnd, that is awful! I'm sorry! But I wanted to say that when you get to Dallas, send me a PM or email (wdwmania@aol.com) if you'd like. We recently moved to Dallas (well, the northern suburbs of Dallas, last fall), and I know how it is when you move to a new community! I'm still trying to get acclimated and get to know people.
Most of the comments I hear are from church members, which really surprised me when it started happening. The preacher's wife has oftentimes made comments like "You just have to make him understand appropriate behavior." At times, they've even said that my son couldn't return to the children's program unless I could guarantee that he wouldn't have any future melt-downs and had "learned his lesson" from a previous incident (which occurs RARELY at church).
I also hear this a LOT.... "God has a special plan for you. He wouldn't give you a child like Dylan without having something special in mind for you."
I took my son to a new neurologist yesterday, who was supposed to be an autistic specialist, and he said, "He may very well be on the autism spectrum but he makes eye contact with me, so I highly doubt it." Do what? Yeah, let's ignore all the other symptoms he exhibits and the fact that looking at people directly was a skill developed over a lot of time. I don't get it.
The contact thing ... my SD was actually surprised T was "so different," at home.
(In all fairness she was newly-diagnosed and not sure how many of these kids staff have dealt with)
Oh, bonnd! You sure did not need THAT attitude, at such a critical time!!!
I hope you learn a lot from being on this board ... and rest assured -- it gets better.
oh oh I have to jump in on this one.
From my dad "oh he doesnt need any therapy now just do what the school offers, he will catch up one day" "i know you cant afford any therapy and no im not going to help you with it because he will just catch up one day when you can afford it" after this comment we havent spoken in a year.
From a friend, that is no longer a friend " that I use my sons diagnoses as an excuse for his behavior" "he causes problems with her kids and him having autism has nothing to do with it" needless to say I wanted to hit her the next time I saw her and we no longer talk.
From his teacher all the time, even today, when I brought up me not being able to go in public places for more than a minute without a complete breakdown "yes my son was DIFFICULT when he was younger, I know how that is" Oh do you now??? Difficult and autism ummmm not the same. "yea one time I almost lost him in a public place" um hello I lost my son at a flipping parade. And I was on top of him the whole time ugh.
ok im sure I will have more later.
ohh ohh an the one I hear the most that drives me absolutly insane
"oh he is just a boy, thats how boys are"
upon hearing of my son's DX, he said "I am glad ___ doesn't have
anything like that". So even cancer is better than ASD? I felt
hurt but I didn't say anything, because I guessed what he meant
was at least he knows how to treat his child and I don't or there is
no cure for a lifelong disability.
Other ones are all insensitive brags about wonderful NT kids
of friends : ) which I ignore because I know they don't do it
with the intention of hurting me...
I have very low blood presure but this one almost gave me a hart atack.
Receptionist: "God gives that for a reason to special parents that can deal with it. My kids are fine and I know that I wouldn't be able to .....".
I have to confess and don't judge me, please, I mean no harm but this one really makes me confused about people:
"Because of my child's autism I am a better person".
Anything else like stronger, aware, educated might work but .... "better" ?
I heard those statements many times and if you put them together it sounds even worse ..... Got it ?
Thank you for letting me say it .... I really needed that.
STtupid Kajoli said ( me ) - "Are you sure he has ASD ?He just feels so NT to me?"
One of my close friends said - I feel so grateful for my ( NT ) children - my major issuse are lke road bumps while yours are like getting lost in a forest ( true but it hurt nevertheless)
ANother firnd who said - "I knew it - thank god you are doing something about it"
My stupid MIL who wrings her hand - insists on visiting us for LONG periods of time ( like 5-6 months at a time ) and keeps referring to R as a broken dream
Allegra good for you - I cannot leive the kids said that
Allegra, I am glad you responded directly to the 17 y/o. Unless he is an outright sociopath he will have those words ringing in his ears, for years.
Kajoli, your MIL sounds like my parents' attitude toward my late nephew (who was injured severely, by the old form of pertussis vaccine). I am for once grateful my mother is too out of it (Alzheimer's) for me to share anything with about Tuhina!
Allegra
Sharlet is an absouletly beautiful child. Just remember teenagers are dumb hopefully someday they'll grow out of it.
Just yesterday my nieghbor said really the way he runs around I could never tell, I think they over dx now anyway
Others
but he is so cute
He looks normal to me.
If you knew, would you have had him
Oh! Like rainman
Okay -- I will also own up to "but she is so bright" to a neighbor whose DD has a VERY tought time with ADHD ...
IF YOU HAD KNOWN -- ooooh that brings out mama bear! My dd is adopted and I DARE anyone to say ONE stinkin word like that, to me!!! You know what? YEAH I woulda!!!! Just wait ...
I always get the same.. he seems fine to me.. My boss told me the other day i do not care what doctor you take him to that boy does not have autism he has speech problems but not autism. I was so pissed.. I do not understand how people can look at a child and judge them. they have no idea. I was at a babyshower on sunday and we got to talking about what else autism and my son and this girl got involved someone who had met my son 2 years ago when he was 1 years old.. and she said what i had no idea your son had autism no that can't be are you sure.. No ass I'm not sure what do people think we make this stuff up for what reason.. People drive me to drink.. Ok, here is my favorite.....a visiting "friend" asked my husband..."sp when is he going to be normal?"There is ONE thing worse than people who say "he seems fine to me."
The day NO ONE says that to you any more. Teens with ASD are not so "fine" to most people, no matter how "normal" or even outright handsome they look.
When we told my father in law about the dx, he asked, "Yeah but this can get lost in the sauce, right?" In other words, the autism will gradually go away with time. "Lost in the sauce?" Who says that???[QUOTE=Matty]
When we told my father in law about the dx, he asked, "Yeah but this can get lost in the sauce, right?" In other words, the autism will gradually go away with time. "Lost in the sauce?" Who says that???
[/QUOTE]
I kinda like that ... as a cook. I immediately think of spaghetti sauce, cooked a long time ... and the veggies just sort of dissolve! Very cute analogy!
Okay, More than once from my dh..."He needs some damn discipline!"
In the past (thank goodness!) from my Mom..."Well maybe one day he'll be able to work bagging groceries at the supermarket."
Things are getting slowly but surely better! My sister and brother (and respective spouses) have been WONDERFUL...
So sorry ALLEGRA(((((HUGSSS!!))))
I believe our kids are angels and indeed we are so privileged to have them in our lives..and they touch anyone they come in contact with..
I have never heard or witnessed such a rude comment on a child before...I would of lost my mind and killed them and probably got off for temporary insanity
XXXXXOOOO!!
The most off handed comment that I've ever received about my son happened when he was 3 months old and I had him in the supermarket in one of those infant carriers on the cart. An elderly lady came up to look at him and said, "OOOh child he is beautiful, you better keep an eye on him. He's so pretty that he is one of those babies that people steal." 
Most every thing else was usually meant in a loving way, but still pissed me off include:
From my Dad, I don't believe it. He is just shy.
From friends, How can that be? you guys are so intelligent?
From Strangers, You must have partied too much.
And the inevitable: "God gave him to you guys because he knew that you can deal with it."
"You don't want your child in a special school for autism...those kids flap their hands and stuff"
Okay I have a really good one. This was about 6 months ago My husband and I had suspected Autism but he was not diagonsed yet. A little boy came up to josh in the park and tried to talk to him. When my son could not respond the other mother actually said to her son Ethan that little boy he must be "Special" Needless to say I snapped back and said Yes Special just like all children right and then I fired back his name is Joshua nice to meet you. I hate when people stare or stick a label on my child. But I know she was trying to explain it in what she thought was a nice way. I did feel bad after snapping at her
I also have another good one. I try to do my shopping at night while the kids are asleep to avoid tantrums and get a little me time but one day I had no choice but to drag my angels in to Krogers around noon. It is usually really busy because there are only 2 grocery stores in my town. My son threw a big tantrum about not wanting to get in the cart. An older lady came up an rudely said Can you not control your child you know you are not the only person in this store. I tried really hard to bite my tounge and stewed about the comment all day. I wanted to find her and ask her to walk a mile in my shoes and see how you feel. Anyway about a week later I had completely forgot about the comment and the woman. My husband owns two buisnesses and one day I stopped in at our car lot to bring him lunch. He was talking to a woman so I waited off to the side and would'nt you know it as soon as she turned around it was her the rude comment lady.She knew who I was as soon as she saw me and spied my son. And this is the best part turns out she is one of my huband's best clients. She loves him and not only buys cars from us but also has her cars detailed and worked on through our other buisness. When she saw me you could tell she felt bad. I just smiled introduced myself as she remarked on how nice it was to meet me and how beautiful my children are. It was a complete 180 from the woman I met in the store only a week ago. I tell you it was priceless to see the look on her face. the moral of the story, careful what you say it might come back to bite you in the butt a week later, Hope this one made you smile I still smile every time I think about it, Amy mom to Joshua 3 and a half Autism and Jenna 2 not affected.I got a good one today. I went to wal mart to get the boys a pool. They are both little fish so they love pools. Anyway I was just talking to myself and said, "i hope this pool can stand up to my two." I was also going to get some pool toys, but I ended up talking myself out of them. I told the cashier I didn't want the toys and she asked why not. I said my son has autism and he might be able to chew through these. The lady looked me in the eye and said, "what's autism?" I was speechless. This was the same cashier who I always go to because she is great with my kids. She has seen Brendon in meltdown mode and I even gave her one of my little cards once when he was having a rough time waiting for me to check out. Shows how much attention she is really paying to her customers. I smiled at her and handed her another card. Hopefully she'll read it this time.Well, I have just had my first, "you kid is such a retard, me and my brother are still laughing at how f**ked up she looks" comment from 17 year old boys. It's bloody hard to deal with that I can tell you
Oh, Allegra! I'm so sorry you had to experience that! I'm so angry I could
scream. I know that brand of teenage idiocy, but it doesn't soften the blow
at all. How did you react? It just makes me crazy hearing thing like this.I told them that Sharlet is gifted and a gift to all tnat know her, and tnat i doubt they are.Thanks MamaKat and Dizzy (((HUGS)))
Allegra:
I feel like coming on down there to kick some serious teenage ass right now. You sure handled that better than I would have. Everybody in that conversation would come away with a painful, if not bloody reminder of how to behave around other people in general, much less people that have anxieties, had they said that crap about my son. You are a much nicer person than I am.
John [QUOTE=momof1] my aquaintance, also a Physical Therapist, used to ask me if I am sure that Quinn has a PDD-NOS over and over.....said "Quinn can't possibly have a form of autism because he is verbal and makes eye contact
arrgghhh!!!! We worked and continue to work on speech, conversing and eye contact with him. She (the PT) still didn't get it when I told her that there is a whole spectrum of ASDs and that each child is affected differently!!!!
She would still say "Don't worry he's fine![/QUOTE]
I bet my mom could relate to that one. No way he could be 5 years ahead in vocabulary and reading comprehension and still be autistic, right?
In fact I remember when my mom and I were discussing my childhood issues once, She told me about a pediatrician who said to her: "Why would you think he's autistic? This kid's not a bit retarded."
I guess you can't learn everything from the medical journals.[QUOTE=Linda11567]
"They don't talk because they don't have too, you do everything for them, why should they talk?" [/QUOTE]
Got that one...OY
"Well, if your kid is going to have something wrong with them, autism isn't so bad." translation - "It's not life threatning." This person meant well, it just came out really off.
"Now you won't be able to buy a cottage up north." translation: ??????????????? We have never expressed a desire to purchase a cottage, so this really came out of left field. I still don't know what she meant. It's definately the oddest thing ever said to us.
[QUOTE=Daddy]A friend:
"Don't worry about his future. I have seen a grown up autistic who is so "normal" that at most you would consider him as an impolite guy"
[/QUOTE]Hmmmmm... your friend must have met me before.
Although "grouchy," "weird," and "insensitive" are the more frequent descriptors I get
Have one more that my mom said this week that was pretty good. Jason was at her has and has lost one tooth and has one more that is loose. She asked him how come his teeth kept falling out if it was from kissing girls? Jason looked at her and said "No Grandma. The glue keeps drying out and so my teeth fall out."
My mother proceeded to tell me from that point that that was a very complex thought so therefor he couldn't be autistic because autistic children don't have complex thoughts. Guess she'll never get it.
Lost that friend.
[QUOTE=camusa]I was recently told that if we ever tried to conceive again and had another ASD kid that I should, "Cut my balls off."
Lost that friend.
[/QUOTE]
WoW!!!!!!!!!!!!!!!!!!!!!!!!!!!! what is wrong with people - that is one of the things that I have struggled with when people feel sorry for me - I am angry and want to say "YOU wish you were lucky enough to have Rohan - dont pity me - envy me"
We are not thinking of more kids because of the 1 kid feels right plus we can focus our attention on R- but wow I would be ballistic if anyone told me that
yeah...I wasn't very happy.
We too have ben focusing on one because...he needs that much focus. My DW says, "never again" to having another babe which kills me. I hope she changes her mind.
As for the a-hole that made the comment he did, I know he was joking, but...that went too far.
OMG what is wrong with people????? He's a gorgeous little kid! What a jerk! And hisgirl if a teacher said that to my kid they wouldn't be having that teacher. What does she think that its contagious? yikes! [QUOTE=concernedpa.]What hurts me the most is Christians who think you have not prayed about it enough is the reason you have this challenge.
[/QUOTE]Boy that would suck hard to hear that ( and I am not even Christian but I can see how it would hurt - but why should things like this surprise us - its always the mothers' fault( SARCASM) -
My dad refused to believe that there is anything unusual about Jaron at all.
"He's a perfectly normal, rambuncious little boy" is what he tells all the rest of our family.
I'm like.. can we say DENIAL !!!
[QUOTE=kristys]The tempation to say "yes, please" and then take the belt and whack the ignorant lout in the face with his own buckle would have been strong.... [/QUOTE]
Yeah. After the fact I thought I should have " Yes... only if I get to hang you by it!! A-hole!!!"
The tempation to say "yes, please" and then take the belt and whack the ignorant lout in the face with his own buckle would have been strong.... [QUOTE=camusa]We too have ben focusing on one because...he needs that much focus. My DW says, "never again" to having another babe which kills me. I hope she changes her mind.
There is a 4 year age gap between my boys for this reason. I needed to be sure my oldest son was doing well before I could even consider a second.
When Jaron was about 2 years old he threw fits a lot. I mean A LOT ! And I would have to physically restrain him so that he wouldn't hurt himself. One time this happened in the grocery store. I was MORTIFIED. I tried to pick him up and carry him out, leaving the cart full of groceries in the middle of the isle. Well he was kicking, screaming, biting me, slapping.. literally foaming at the mouth. As I am trying to get him out of the store a man approaches me, lifts his shirt up a little and says (drum roll)
"You want to use my belt?"
I have never glared so evil at a person in my entire life. If looks could kill that man would have been dead where he stood. I couldn't even find words for him.
Angela, my father grew up in that culture -- if a kid so much as peeped, they got backhanded. He did not believe in that, but there were times he just fell silent ... but, TODAY? That guy just sounds like an idiot.
No Kids, 30's, lives alone, plays poker almost every night.
He works in the cafeteria in my building and we USED to talk about poker.
A family member denied that my son had autism for years. Then the last time we paid a visit she said:
"You need to watch that boy so he doesn't end up in a mental institution" needless to say, I have been keeping my boy away from her.
What hurts me the most is Christians who think you have not prayed about it enough is the reason you have this challenge.
Concernedpa.
"They don't talk because they don't have too, you do everything for them, why should they talk?" My know it all sister who is sure nothing is that wrong and if it is of course its my fault.
"Try doing that with a 7year old, 5 year old and a baby." Same sister. When I said something about handling all 3 on my own and taking all 3 to the grocery store while the kids and I were staying alone at my mother's for 6 weeks when she died. She was comparing that to 2 year old twin boys and a 3 month old baby girl, along with all the autism symptoms, there was no diagnosis, still isn't. That comment still makes me mad. Even if the boys weren't autistic how do you compare that.
From DH's neice in law who was very jealous that I was pregnant at the same time as her and had twins, she wanted the twins. "I don't care that Linda has 2 and they were 10 weeks premature, my son has collic, she has no idea how hard it is. I was up for 2 hours in the middle of the night." She's the one who had no idea. I never got more than 2 hours sleep in a row for the first 6 months. And I had no help. I would have traded places in a heartbeat. I wonder if she still thinks that.
Other sister, "They can't possibly be autistic, they don't bang their heads. John's (her son) special ed teacher said so."
And from every dr I see anymore, "you're an angel for taking care of these kids", "I don't know how you do it, you don't only have one but two", or something very similiar. It gets on my nerves. I don't think in those terms, I just do what has to be done. Doesn't make me a saint.
I get the you want something to be wrong, your a good victim speech from sisters too.
Oh and the kicker from DH that was very hurtful when they were running by the fence and doing that side vision thing, obvious stim, I said that's a sign of autism. DH- No, its not with a scoff. Me - yes actually it is. DH - Ok then they are autistic if that's what you want. No one wants that, but I'm not going to bury my head in the sand either. That was probably the most hurtful one.
Nick, it is so good to hear you state EXACTLY what we observe in Tuhina!
Well, when my nephew and son were diagnosed at the same time, my uncle told my dad that we (meaning my sister and I) had better stop having kids, because we might have more of "those kind"
The summer before my oldest started kindergarten, we visited the teacher in her classroom to get Drew acquainted. Her son, who was about three, was in the classroom with her. Her son went right up to Drew. She said, "NO! STOP! Drew is special. You need to stay away from him." I about died on the spot. Needless to say, a letter to the principal followed that visit. She phoned us, apologizing. She said, "But if you don't want me to refer to Drew as special, how should I refer to him? I said, "How about you refer to him as Drew?"Oh, today I remembered one from not too long ago (and really wish I hadn't). A few months before I was let go from my preschool job, I was really starting to have problems with coworkers misunderstanding me, and I could tell they were complaining about me to the boss. So finally after some reluctance I decided I had nothing left to lose so it was best I go ahead and disclose my disability to see if we might could work out an understanding (since this preschool was actually geared for kids with developmental disabilities). My boss and direct supervisor were in there, and my boss looked at me and said, and I quote:
"Is that diagnosed or is that something you've decided after working here?"
Had I not still been employed at that point I would have given her a one-finger salute right then and there -- and never felt bad about it. But since I was hoping I could work things out, I just explained that I *had* actually been diagnosed, and so on and so forth. Ultimately it did not matter -- my naievity would eventually be used against me in order to get me in trouble and fired a few months later. I still think she's an idiot (along with 70% of her staff) -- and I don't say that often; I'm usually a pretty understanding guy -- but on the flip side, I really do miss my kids a lot. So many of the kids I see pictured here and on AW remind me of them so much 
My dad once said to me after my son was diagnosed:
"Well you went to all of the trouble of giving him this label now you have to deal with it. He's not autistic!!"
I think he feels differently now that he has had time to recover from his shock and can see the differences in my son as he gets older. But it really did hurt at the time.
Well I got one ... more to do with International Adoption tahn Autism, but it STILL was something nobody should say to any parent ...
We were in Taco Bell (one my daughter's three foods is a plain bean burrito) and a woman came up to tell me how cute the kids are (they from India, Guatemala, and China. We are conspicuous.). She told us how special we are to do this for them (a well-established cliche), and I said well we aren't special yet, but by the time they have grown, we might be
She went on to say, "We always thought about doing that (adopting), but we REALLY couldn't justify it (?), because we have two PERFECTLY HEALTHY kids, OF OUR OWN!"
First time I ever heard my husband growl and snarl at anyone, in public ...
And another one -- not so great but still wondering what she meant, two months later -- I emailed a friend who is famous for sending me stael, old jokes and chain letters, to tell her about T's dx. She replied, Oh, well, seems like it's always something.
I have not gotten anymore of ehr stale jokes or chain letters, since, though! ... maybe she thinks its contagious?
My MIL was over and she asked if I was reading any good books so I went and grabbed my stack of newest autism books and she stated "oh..it that all you read about ..it is so depressing..cant you read about anything else?" and of course my radar went off and I go on my podium instantly telling her WHY I am reading them..to find ways to help Sarah..looking for answers..bla bla bla was all she heard..I never tell her what I am reading anymore:)I just don't like when people think children with Autism are "in their own world" THEY ARE NOT (sorry for yelling) they are very aware of EVERYTHING going on!!! I also don't like when people say "he is Autistic" uh no, he HAS Autism, since I just feel it's just something he has, not who he is!! I think it is so sweet, when I hear my stepmom correct herself and say "he has Autism" makes me feel like she gets me.
[QUOTE=mom6]I just don't like when people think children with Autism are "in their own world" THEY ARE NOT (sorry for yelling) they are very aware of EVERYTHING going on!!! I also don't like when people say "he is Autistic" uh no, he HAS Autism, since I just feel it's just something he has, not who he is!! I think it is so sweet, when I hear my stepmom correct herself and say "he has Autism" makes me feel like she gets me.
[/QUOTE]I understand your frustration (I promise). But what you're talking about is just semantics. Both schools of thought wind up working out to the same results, in those particular respects. Either way it will be important that your son is genuinely accepted by other people, regardless of how they choose their wording. It's what's inside. Trust me -- even people with kind words can be fake sometimes. And sometimes people who mean well can inadvertently choose their words poorly.
stickboy26,
I hear you, the he has Autism/is Autistic I know is mysensitive issue. But the "he/she is in their own world" comment really bothers me, I find it very ignorant.
True. We do sort of have our own "worlds," however it's true that it's not fair to assume we're always there. We sort of move back and forth between our "world" and yours, using our own as an escape when we get overloaded. But we do want inclusion with other people so we try our best to stay with you as long as possible.And you're right in that we are aware of much more of our environment than people give us credit for -- we just perceive it a little diferently and place priorities in different places.
Thanks so much for sharing your perspective, it was really nice to read your post.
Okay adoptive parents love to share these tales ... so maybe we might, too?
I will start, with MY OWN! To my (retrospective) amazement, I ACTUALLY SAID to a mom of a kid on the spectrum this weekend ...
"Gee, I met him last winter and I had NO IDEA!"
Her response was, "Oh, REEEally ... "
Live and learn. I am still feeling like crawling under a rock.
Anybody else garner any idiotic remarks, from others ... or made any like ME?
Yeah-My Evil Mother (who is no longer allowed to see him): "I knew it. I always knew there was something wrong with him"
I got more. I'll make a list
The ones I have heard
1) Good at playing the victem.
2)God only gives - - - to special people. ( To which I replied I wish I wasn't so special.)
3) It is just as expensive and difficult to raise a gifted child as it is a child with special needs - - Needless to say that one left me speachless for a moment. I have both and I can assure you that it is no contests . The child with special needs wins hands down .
Oh, yeah, on another board a woman began ARGUING with me that I should not be pushing for more services, b/c Special Ed funds just detracted so terribly from HER DD'S GIFTED PROGRAM ... A lot of folks jumped at that one.
I am convinced 99% of it is well-intentioned people who just do not "apply good sense" before commenting, or do not "get it," and they suffer for weeks after making such comments ... I HOPE so, in a way!
Gosh - I read all the posts and it's really pathetic that I can relate to most of them!!!!!!
The latest one I got was ( my a "dear" friend) - "U always want to imagine the worst for your child - stop being a perfectionist - she is beautiful the way she is - she doesnt need therapy crap"...
Therapy crap???????????
Oh and my mom in law says " as long as therapy is going on, that's fine, but don't make dietary changes - u don't even know what "disease" she has so lets not jump the gun here".
What "disease?" Okay ...
On holiday recently Lachlan started to follow an elderly couple down the beach, at one point taking hold of the mans hand.
Once I caught up they said "That must be aworry for you, he would have come with us" I replied "You both look very similiar to my parents so he is probably a little confused and he has autism and doesn't really understand stranger danger just yet".............their reply?
"Oh, what a shame, he's so good looking too"
(uummm - so would it be easier to understand if he was ugly?)
Mysh
oh oh....and I gotta share these too (not asd related but again comments about Lachlan)
Lachlan was born at 29 weeks weighing 2lbs.
I went shopping when he was about 8 weeks old and asked the sales assistant if they stocked clothes smaller than 0000, to which she replied no they didn't most babies grew too quickly anyway. I said that I was looking to buy for my premature baby and her reply was "Look we don't stock them, those babies don't usually survive anyway"
comment no:2
A friend said to me "I was going to buy him a present but I wasn't sure what was going to happen"
Gee, thanks - I wouldn't want you to waste your money on a baby that might die.
Mysh
Both my priest and my pediatrician have suggested institutionalization. Of course, they have no idea that institutionization is no longer possible except if the child is profoundly affected or completely out of control and dangerous to himself and others. So even if I had WANTED to institutionalize our son (which I didn't), it would not have been an option anyway.
Oh, yes, once I received a 5 page typewritten letter from a fellow churchgoer whose grown son has spina bifida (which, I guess, made her think she was an expert on disabilities, including autism). Basically, it suggested the "woodshed" approach. I've kept that letter.
My sister had 3 children by the time the oldest was 4.5. She told me, "Your one is harder than my 3...heck, he's like raising 7 at once!"
Several times she's compared raising my son to training a dog.
My all-time most hated comment is, "God give you only what you can handle..." Tell that to the family with the autistic child down the street where both parents had complete nervous breakdowns, they lost their house, the mom lost it and beat their child so he was taken away and put in permanent residential care the the grandmother is now raising the NT one.
These are some good ones! I know they are painful comments, but I amlaughing out of sad recognition.
My favorte is still my mom: I posted this awhile back, but I think it's so
crazy, that it might amuse/horrify some of you newbies. My mom said,
ahem, "I think that he must have been murdered or tortured in a past life
by
children, and THAT is why he doesn't like other kids" Whaaaaaat?!
But then my mom has always been a nut. These from friends and
acquaintences:
"He's FINE. All kids just develop differently."
"No offense, but I just couldn't handle it if there was something WRONG
with one of my kids"
"Do you regret anything you may have done to him as a baby?"
"Wow. He's never going to be normal. That's so sad."
"You know, I just don't see it. I don't think he has autism."
Oh, people just baffle me....
oh cannot get over the things people say. You all have so much self control. I'm getting a little snipy in my old age. And I tell my mother to shut up whenever she brings god into a conversation about Autism. Sometimes I'm amazed I'm not in jail for going postal on someone who makes rude comments to us. We don't deserve to be judge this way.
"He just needs to be taken behind the woodshed." Said by a family member, suggesting that a good whipping will take care of the behavior problems.
"He's just going to be an engineer one day." Same family member, who doesn't understand that opening and shutting cabinets and staring at doorknobs is not indicative of brilliance.
"God only gives you what you can handle, There's a plan for you, just pray, blah blah blah."
Oh yeah, I've gotten the institution comment before too! Seriously, like it's common to lock up toddlers!?!
my aquaintance, also a Physical Therapist, used to ask me if I am sure that Quinn has a PDD-NOS over and over.....said "Quinn can't possibly have a form of autism because he is verbal and makes eye contact
arrgghhh!!!! We worked and continue to work on speech, conversing and eye contact with him. She (the PT) still didn't get it when I told her that there is a whole spectrum of ASDs and that each child is affected differently!!!!
She would still say "Don't worry he's fine!
A friend:
"Don't worry about his future. I have seen a grown up autistic who is so "normal" that at most you would consider him as an impolite guy"
(pfffttttt)
If anyone can do it, YOU can"
Let's see some others I've gotten:
"He needs to be in an institution so you can have a normal life" ~~Parent of an autistic child...also a neighbor at the time.
"But he looks so normal" ~~ Lots of people who then got about a 30 minute talk about the nature of autism.
"We'll take over now sweety...You need a nice long rest" ~~ a comment made at B's first IEP meeting.
that old "God doesn't give you yada yada yada" speech ~~ two days ago by my best friend
"at least you got one normal one. Be thankful for that" ~~ perfect stranger in the store
The list could go on and on. It's kinda like people just can't help the stupid comments. I've made a few myself I'll admit. It's human nature
2nd round mom --
I just sent a list of dd's strengths to her SLP for her IEP ... it included,
"I have never heard T say she is bored."
I laughed after writing it of course!
I've had an aquaintance ask me over and over again...one time right in front of him "Are you sure he is he has PDD-NOS? One relative said "Well, it's just as well. The world is such a bad place. He'll never know. He'll just stay in his own world." A friend "You are kind of lucky, Look at how he amuses himself" I'm sure they both meant well, or couldn't think of anything else to say but,
Disney ... as an excuse for ... WHAT? Sheesh.
I've got some others, now that I'm on a roll.
Honey I just can't do the Autism thing with you anymore. I know its hard for you and I know you need someone to talk to. Can you maybe friends with others parents doing the Autism thing.
I once talked about giving up the dream of my son's growing up to be doctors or lawyers and having to face the fact that I maybe caring for them the rest of my life. A friend said to me. Dreams change sweetie, many of us want our kids to be doctors or lawyers and it hardly ever happens. Heck I'm raising my grand kids because my son is in jail.
Seriously do the two compare??
Oh, MY, what a list! Most impressive! Aren't there some fiiiiiiiiiiiiiiiiiine folks in the world?
"role of VICTIM?" Geez laweeze!
I've been told I over exgerate how difficult it is raising a special child. One parent said she raised two kids and she knew it wasn't nearly as hard as I made it out to be, even if my kids were special needs.
Another person told me I take on the role of the victim very well.
A teacher's aid was talking about how nice it would be to have new furniture in her house and I commented my house would always be very functional for the kids. She said she was glad her kids were getting older and more responsible so she could have nice furniture and things around the house that they might have messed up or broken when they were little.
Another teacher's aid told me she will be teaching second grade next year and she can hardly wait. She may have been excited, but it sounded like she couldn't wait to get away from the handicap children.
Wow they are both Autistic, that's amazing.
Well you may not have expected to have two kids with Autism but you were the right mom for the job. That's why god picked you.
Your so brave, I couldn't have delt with have a child like that. I don't know how you do it.
You know the person that said that to me is actually a lawyer. She tells you that by day she breaks up american families. Divorce Attorney, she is also childless and drunk. I blame the booze for her comment to me but it was at the time very hurtful.
Here's a brief story.
My husband works 24/7 at Christmas time because he's a jeweler. I wanted to attend our civic league's "Ladies Annual Holiday Social and Gift Exchange". I had to take Andrew with me. I told the hostess, who I know casually, and who knows Andrew and the diagnosis, that I came and I brought him because I had to... She said that was fine.
He was very well behaved. He walked around, only touched one thing he wasn't supposed to, ate a few crackers, etc. All was well. We were not glued at the hip. I was taking a photo when a neighbor who I really don't know taps me and says in that way..."You had BEST go check your SON!" I immediately walked around the corner to where he had been very calmly playing the piano, one key at a time (I asked permission). There he was, standing still, bewildered, looking at me...He had had diarrhea that went down his legs. (He had recently completed a course of antibiotics for an ear infection and was totally better, no symptoms, bowel or otherwise.) The woman who told me had disappeared and no one else was near by. I stripped him, cleaned him redressed him and was just getting ready to start cleaning the oriental rug and hard wood floor...He had been standing over the edge, when the hostess came back in. I told her, apologized, offered to clean and pay, and she said, "Tell me what you need,,,", God bless her! She took care of Andrew while I cleaned. Another neighbor, a friend this time, came and helped me.
Towards the end of the party, the first woman said to me, "Why didn't you get a babysitter?" I said, "He has autism, and it's 2 weeks before Christmas". She said, "You still couldn't find a babysitter?" I said, "My husband would have taken him to work with him, but it's two Saturdays before Christmas and he's a jeweler and the store is too busy. It was either bring Andrew or not come at all, and I wanted to support the Civic League." She said, "You should have gotten a babysitter." I let it go...
The next civic league board meeting was held at her home. The president told me NOT to come because of this woman's concerns about Andrew. They didn't even know if I was coming let alone my son. I am not a board member, but I am on the newsletter advertising committee. Ironically, I had been to her home in the past with Andrew as her husband is on the board...he has been nothing but nice to Andrew. She wasn't there at that meeting, so she may not even know that I've been in her house!
Whew!
I'm glad that's over!!!
I'm trying to be nicer to people and help "educate""This was just God's way of saying they shouldn't have had kids."
-regarding my sister and her husband
(my sister and her husband had been trying for years before my nephew was born)
[QUOTE=tzoya]There is ONE thing worse than people who say "he seems fine to me."
The day NO ONE says that to you any more. Teens with ASD are not so "fine" to most people, no matter how "normal" or even outright handsome they look.
[/QUOTE]
I agree tzoya. I almost wish sometimes I would hear that (and I'm sorry I don't want to offend anyone here.) I really wish he would appear more "NT".
Hi Everyone
Yes people do say stupid things and they are hurtful.
I recently found this site and I am glad I did. I just had my son's IEP (fine/gross motor skills and speech issues). I always thought and was concerned about my son not really wanting to play with his peers but he was always happy/smiling and was never destructive etc. I tried talking to his other school but no one listened so the drs wouldn't listen.
We moved in the fall to another area in the same school district and I am so thankful we did. His teahcers/staff all have worked really hard with him and spoke with me Monday about him perhaps having Aspergers Syndrome. I came home and of course cried. Hubby is in Dallas so I had to do it over the phone when I told him and all I really wanted him to do was to hold me.
I was speaking to my friend and telling her all about my son's IEP. I also explained that when we moved(yes again) to Dallas I wanted to find a part time job while the kids where in school.
She totally went off on me telling me I was a horrible mother that I should be more concerned about my son and preparing him for a life in an institution! How could I be so selfish and think of myself. "you might as well just lock him up now"
You can only imagine how bad this hurt. I hung up as quick as a flash and cried for an hour.
My kids are the most precious thing to me in all of the world.
People can be so cruel.
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