Well meaning people | Autism PDD

I totally hear ya! My Stap dad says Owen is fine , just lazy as well. I have been sending him emails here and there with info about autism (my parents live 5 minutes away, but i still use email so he will read it and not argue with me) He also watched the CNN "autism in a world" and suddenly he is much more understanding.

The worst part for me is telling strangers. I am not embarassed about OWen at all! but it is hard when a store clerk notices he is a little quiet, or shy, and keeps trying to get him to talk...as if he should..and I have to explain. Then hear about there friend or family member. Now I just say..oh he is just shy, if it is to people I am never going to see again, just too much hastle.

A little vent here.

OMG. If I have to listen to one more story about a child who had some delay when they were young and now they are geniuses or law school students, etc. I think I will lose my mind.

My son Alex (4.5 yrs), was diagnosed with pdd-nos a month ago. I am still telling people about his diagnosis. I find it to be a difficult thing to talk about still. When I tell someone, it is after a lot of thought and practice. Emotionally, I am still on a roller coaster.

Alex will be what he will be. I am just waiting for it to unfold for me. Realistically, a traditional career path probably won't be for him. I am okay with that. We've always known that he was different from day one, no regression here.

I know these people mean well when they tell me these stories, but they just don't apply to me. I am getting a little crazed about this. Any ideas of what I should say to these people?

I guess it could be worse. When I tried to explain this to my mother in law, she said "well maybe he's just lazy" LOL

Thanks for letting me vent. I think upcoming IEP stress is getting to me.

I understand your frustration, however, I believe that most people try to be optimistic and hopeful and want to encourage hopefulness in others. Basically, they don't know anything else to say. My son has come a LONG way, and I try to focus on the positive things that he has accomplished. Between you and me, however, I know that he is going to have some serious difficulties being independent in college - which is just one year away!! However, people are always telling me how he "looks so normal," which is incredibly frustrating. I just smile and say, "Yes, he does. We're so proud of him; he's a great kid." Truthfully, they don't really want to hear the gory details and I'm not sharing them anyway.

I think you and I have an advantage that we saw our children this way from the beginning.

When I was told Levi has an autistic spectrum disorder I was not even shocked. After having four children before him, I knew he was very peculiar. He just did not fit what I had seen on TV about autism, so I thought perhaps it was something else. I did not realize it could be low-functioning or high-functioning.

I understand the frustration with people's comments. I just try to look at the intentions of their heart. They mean to encourage me and give me hope. They are uncomfortable with what to say. There is no curriculum in school that covers how to address situations like this. I try to realize if it was not my child I might be saying the same things to them trying to give them hope.

I was told Levi was lazy, rebellious, stubborn, and going to be a super genius. LOL! Well, truth be told he is a little of all of the above, but he is also a wonderful blessing that challenges me daily. I don't know what his future holds, but I am confident he was created for a purpose and I intend to help him discover that!

I think the comments are easier to take if we don't take them personally and try to understand the intentions of their hearts...they either want to give us hope or they are having a difficult time accepting it too. It may not be the best things to say, but they certainly don't mean to harm us. My husband is still in denial and tells me things like, "you and I have discussed this before and WE DECIDED Levi could not have autism" (meaning he decided this and cannot still accept it for some reason). Do you love it?

People that tell you those things are well meaning...they don't realize ( I hope) the negative impact it can have on us...they are most likely trying to encourage, but it sometimes enrages me so much because I'm like, okay so if he's not a genious, or a prodigy I should be devasted? I want to say....

I'm happy that my child is happy and loved and making progress...I'm happy that he is healthy and silly and loving and has parents and family that adore him and accept him and try the best they can to help him...

I will be happy if the future turns out to be different than it is now...I will be happy if he makes friends, goes to college, gets a job, falls in love, gets married and has children of his own...if not, then I will be his friend as I am now, I will see he gets the best education he can, I will be his love, as I know I am now...I can't change things only make them better...but you know...unless we had children as special as our, we may not have known the impact those "well meaning" statements make...

I'm not saying that you are wrong in wanted to vent, I'm so with you on that one, and I too tell people who I dont' feel like telling his dx to that he isn't a big talker or he's shy and tired...its our judgement who should know and its up to how you feel about it to share it...I use to be alittle more defensive about it all, especially when I was alone in it, but now that I have support w/ family and friends, and of course my greatest support network, you all...I feel stronger and those well meaning people just make me laugh to myself like...get a clue hon! of course there are still those days when I want to just smack someone LOL...take care!

Best to you all...and lots of love too!!! hugs!

Ali

I learned to stop telling anyone that really didn't matter about Josh. He will always be perfect in my eyes thats why I'm sooo glad I found this board becouse people try to tell u stuff like that and ur like u don't even know what I'm going through! My in-laws r the same way! My family would never act as cold as they do.They look at Joshs problem as something to gossip about! So when the in_laws start with their crap, if not for u for Alex say something to them! Thats what I finally did! Its nothing to b ashamed of and he isn't just lazy~ and if he is lazy he probly got it from their side!LoL

I think the biggest problem is just ignorance. Most people think of
"Rain Man" when you say Autism and they just don't understand that
it is a BROAD spectrum. They are usually well meaning but
uninformed (like I was until this changed my world). My Mom
ADORES Gavin, but cannot accept that he is autistic. Every time she
sees him she'll say "He gave me a hug.....autistic children don't give
hugs...he'll be fine... he's just shy". Even my pediatrician said that to
me for the first year (we have a new pediatrician now :) ).

I agree with all of you. I think though, I am still in the defensive stage because I haven't come across too many " well intentioned " people. However, I have come across some "rude and disheartening " people.The kind who don't really SAY anything, but instead make loud sighs or roll their eyes at his behavior. (He doesn't do well in DR's offices) I even had a man get up and move to the other side of the room. There was also a time two weekends ago that my oldest daughter had her ballet recital. I tried very hard to get a sitter for Nick, but was unable to do so. Anyway, he was gettting fidgety and his foot hit the back of a seat.The lady turned around and said for him to stop kicking the seat. I explained that he was autistic and he didn't mean to do it. She then proceeded to tell me her 12yo son was autistic also and they had worked hard to get him to behave and that I shouldn't bring Nick out until he could sit still. I left after my daughter's dance routine. I cried the whole way home. I think it was even more hurtful to me that this comment came from someone with an autistic child. I guess I felt like we are all part of a special group of people who support one another. So with that being said, I'd trade a "well-meaning" comment for a nasty insult anyday.

P.S. I still get some denial from my mom-n-law about Nick's diagnosis. She'll agree that something is not right, but not that it's autism. I don't argue.

Thanks for letting me vent too!!! LOL

Nicksmommy, that was a pretty rude thing of that lady to say. We have been pretty lucky (so far) as all the comments we get are good or how cute he is. Luckily, he is pretty behaved and shy so we rarelly have to deal with tantrums but that ladies comment was totally outa line, I would have been pissed off!

It is very hard. However, I can kind of understand. Until just this last mth, I knew diddley about autism. I only knew of Rainman and House of Cards (good movie if you haven't seen it). It shows autism as unrepsonsive or cold to affection and what not. I never knew they could be smiling and laughing, looking me in the eye and loving to be hugged. He's also so diff at home and with his family than he is w/ others (strangers) especially children and outside home. I even took the pdd test twice, answering one time for my point of view and the 2nd time for point of view towards others. The scores were diff but both still put him in same category. So anyway, I guess what I'm trying to say is that while these comments seem rude and insensitive, at the same time I understand the public's ignorance. With all the stuff in mags and on news lately though I think that will gradually improve.

Amber

browneyes ... you are a beautiful human being

Gavin's Mom ... we, too, have a new pediatrician!

Amber ... as always, our sons sound so similar! Luke is so completely different when he's home with us than when he's anywhere else. It drives me crazy and I wish his therapists could just see how he is with us. If he were with others the way he is with us, he wouldn't be autistic! Maybe just speech delayed.

ah well ...

Our recent *story* regarding our in-laws (WHY is it mostly the in-laws that are the boneheads?

) ... my dh just emailed his brother and told him about Luke's dx. (His parents and both sisters have known for about 3 weeks.) His brother emailed back saying that this was the first he'd heard of Luke's dx and "Don't worry. He'll probably just grow out of it. A lot changes from 2 to 3 y/o."

And THIS guy is a university professor!! First of all, I couldn't believe that no one in dh's family took this dx serious enough to speak to each other about it (my F-I-L didn't even know ... a week after we'd told my M-I-L ... until my dh told him on the phone)! And, like, not to gossip but just to share what's going on! My family is all involved (even from 8 hours away) and concerned, etc. And to say that Luke would "grow out of it"?! Talk about ignorance!

But they never see Luke anyway, so I guess it doesn't matter.

My mother-in-law once said to my older son, "Your dad was just like your little sister when he was little. We just handled it in our own way and he turned out fine." She was 'refering' to our autistic daughter and a meltdown she was having at the time. Handling it in their "own way" meant beating my husband with a belt. And no... he didn't turn out fine---believe me!

I chose to ignore her remarks then and now. My child is more important than stupid remarks. My mother-in-law has also learned her way was wrong and that her son suffered the ignorance of the time. His parents didn't have near the resources I have.

So, I am actually dealing with two autistic people, my daughter and my husband. My husband was able to go on to college, get a degree in biology..and spend the next 30 years working at a dead end job, wearing the same uniform everyday...Now I"M venting! It's so hard 'cause he's way smarter than me academically yet I have to deal with everything because he's off in his own little world much of the time.

That felt good!

lynnmomofkelly

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Oh my goodness, I have been wondering the same thing about my husband. Wow, how strange to hear somebody else say it, yet how relieved! For a while I literally thought my husband was a sociopath from his inability to show empathy to others and his inability to truly bond, he is so disconnected from our children unless they are in his face. He cannot seem to communicate with our kids, I always have to explain to others what he means when people look puzzled. My husband loses himself in a role playing online video game now all the time except when he works. He was not that way in the beginning when I met him, but now he is highly addicted. I cannot leave our small children with him, because he totally tunes them out and does not hear any of us when we talk to him.

My husband told me that when he was a child he never had a friend until fifth grade. He said all the children hated him. He has told me he recalls feeling intensely angry by the time he was four years old because nobody ever seemed to understand what he was saying to them. He tried over and over to talk to his parents, teachers, etc and they all always misunderstood everything he was saying. I know he was very hyper and his mother was abusive to him to deal with his hyperactivity and rebellious attitudes. He said she would never touch him except one time when he had a really high fever she rubbed his head. How sad!

Now my husband is in denial about Levi. He thinks we can some how reason it away and that will make it so. I was wondering when Levi is tested if they would find an excuse to test my husband too since they are beginning to question genetics being involved...maybe he would actually be relieved to find out why his mind works like it does. I know when he saw the movie "A Beautiful Mind" he told me that is what he needs from me (to stand by him and love him even though he knows he is impossible)...he said that movie was an epiphany to him. I know my husband seems to be able to master any one thing at a time if he sets his mind on it.

Thanks Lynn for saying what I have wanted to question myself...

Julianne