How to deal with the pity?

[JFTB1177]

So dh and I have been slowly telling people about our middle son's autism and I am already getting sick of the pity ("OMG I'm sooooooo sorry!", "That's SO sad" etc). I feel like saying please stop pitying me!!! My son is awesome, he's bright and fun and different. Yeah he's challenging, I'd be lying if I said he wasn't. But I love him with all of my heart. So I can't hold a conversation with him but he is making progress, and it feels the best when he climbs into my lap and wants to be loved. His ASD doesn't define him.

But I can't tell all of that to someone I am casually mentioning to that he has ASD. How do you deal when people give you pity? This question is not just for parents of kids on the Spectrum but any developmental disorder.

[NiteNicole]

I think you can say something short like, "I appreciate your sympathy, but we don't think of it that way." 

I do get some of the "that's so sad" (and really, I agree, in my DD's case it is sad that she was totally developmentally normal till almost four and now sometimes she can't walk.  I'm sad for her, she sometimes is sad for herself) but mostly I get, "What's wrong with her?" which irks me to no end.  I know people mean well which is the only thing that keeps me from going OFF, but damn, have some tact. 

[Emmeline II]

Originally Posted by JFTB1177 
But I can't tell all of that to someone I am casually mentioning to that he has ASD. How do you deal when people give you pity? This question is not just for parents of kids on the Spectrum but any developmental disorder.

The solution may be to not casually mention it. If the revelation doesn't have a purpose then they probably don't know what else to say. If you are in a play group where the other children are playing nicely and yours is running around and grabbing toys  you might bring it up as an explanation so they don't look at him as simply unruly.

I only bring his diagnoses up when it matters to ds-- like when the lifeguard was calling after ds forever without ds responding; I told her that ds has a receptive language disorder and he probably wasn't deliberately ignoring her--after that she might use another swimmer to get his attention or move to his line of sight. I also had to mention them to ds' gymnastics instructors because I don't want them to think he is deliberately ignoring them or breaking gym rules, and that he will need closer supervision.

[2xy]

This is what I was thinking. If there's no reason to talk about it, why talk about it?
 

Originally Posted by Emmeline II 

The solution may be to not casually mention it. If the revelation doesn't have a purpose then they probably don't know what else to say.

[babygirlie]

It's the opposite here. Everyone keeps blowing sunshine up  my.... SO sick of it.. NO she is NOT just like your cousin's brother's uncle who is now a space engineer genius who never had a problem after the age of 5. NO this behavior is NOT normal. STOP comparing my child to the child worse off down your street that you met once. it's STILL a challenge regardless and they aren't even the same ages!

[JFTB1177]

Originally Posted by 2xy 

This is what I was thinking. If there's no reason to talk about it, why talk about it?
 

Maybe "casually" was the wrong word to use... what I'm referring to is when we have told family and friends, not strangers.

[JFTB1177]

Originally Posted by NiteNicole 

I think you can say something short like, "I appreciate your sympathy, but we don't think of it that way." 

I really like this!!!

[2xy]

Originally Posted by JFTB1177 

Maybe "casually" was the wrong word to use... what I'm referring to is when we have told family and friends, not strangers.

Wouldn't family and friends already know that your child is challenged? Even without an official label?

[FarmerBeth]

I think regarding family and friends who take a label that way that : (1) disclosing the label may sometimes be necessary to help everyone understand and feel included and (2) the reaction is to the label, not your child.  What I found useful was to remind my family that my child was the same person after the diagnoses as before.  I explained that all the great things about my child are still part of him and that the diagnoses will help find interventions for the people who work with him.  I told them that it was actually very positive to have this diagnoses because we could move forward into action, and I reminded everyone that ASD is a spectrum disorder with a broad range of ability and types of challenges and strengths.

babygirlie, I get a lot of the latter comment about the kid worse off down the street.  Our location has a number of families with severely challenged autistic family members and anyone who knows our situation (even pre-diagnoses!) reminds me how lucky I am that my kids aren't worse off if they see me looking frazzled.  All I can do is tell them that I know we are lucky in some ways but that being "high functioning" can offer some different challenges.

[NiteNicole]

It's hard, but I do try to remember to cut people some slack.  Some people will say anything to avoid saying nothing and most of them really do want to be helpful or encouraging or sympathetic or whatever they think THEY would want to hear in your place (and some are just thoughtless).  Some people may be really raw and want the sympathy, some people probably DO want to hear about the kid who was just like theirs but is just fine now as an adult, some people may want everyone to be just as stoic and "no big deal" as they are.  People can't know what you want to hear and they mostly do mean well.

My biggest issue is what people say in front of my daughter.  I will cut off that "oh poor you" or worse, the horror stories, so fast it will make your head spin.

[Emmeline II]

Originally Posted by FarmerBeth 

I think regarding family and friends who take a label that way that : (1) disclosing the label may sometimes be necessary to help everyone understand and feel included and (2) the reaction is to the label, not your child.  What I found useful was to remind my family that my child was the same person after the diagnoses as before.  I explained that all the great things about my child are still part of him and that the diagnoses will help find interventions for the people who work with him.  I told them that it was actually very positive to have this diagnoses because we could move forward into action, and I reminded everyone that ASD is a spectrum disorder with a broad range of ability and types of challenges and strengths.

I think this is how it went with dh's family, and when I think about it, it isn't much different from what we went through as parents getting the diagnosis. My in-laws were the ones that "pushed" (in a good way--we'd been seeing a family therapist who had been telling us to wait until he started 1st grade which would have been a big mistake) us to finally take ds to a Dr. but there is something about actually having a diagnosis that can feel...sad/permanent/the "death" of the hope that "it" shall pass, even though we were expecting--even needing--the diagnosis. We go through it, so it's not surprising that our families experience something too.

My family didn't seem to need that reassurance; it may be because they live far away and don't know ds as well, or that my sister's son has more...serious...disabilities and ds' issues are relatively mild in comparison.

So dh and I have been slowly telling people about our middle son's autism and I am already getting sick of the pity ("OMG I'm sooooooo sorry!", "That's SO sad" etc). I feel like saying please stop pitying me!!! My son is awesome, he's bright and fun and different. Yeah he's challenging, I'd be lying if I said he wasn't. But I love him with all of my heart. So I can't hold a conversation with him but he is making progress, and it feels the best when he climbs into my lap and wants to be loved. His ASD doesn't define him.

But I can't tell all of that to someone I am casually mentioning to that he has ASD. How do you deal when people give you pity? This question is not just for parents of kids on the Spectrum but any developmental disorder.

You may want to consider having that conversation with one or two "emissaries" that can convey this feeling around the family. Or if you have a facebook page and your family is on it, perhaps make a post and include your ds' cutest picture. Whatever else you do, I think it could be helpful to share this story with them Welcome to Holland. And I think what NiteNicole suggested is great on the fly.

[JFTB1177]

Originally Posted by 2xy 

Wouldn't family and friends already know that your child is challenged? Even without an official label?

Not really, because we rarely see family in person with the exception of my mom, who lives across the street and was one of the first to notice things about ds. She (my mom) has watched him since he was born and is very close to him (and to all 3 of my kids actually). Everyone else we really only see at birthdays and holidays for the most part. DH's parents are much older than mine (and therefore more "old school") and the times they have been around ds they just thought he was "acting up" like many 2 year olds do.

[JFTB1177]

Originally Posted by FarmerBeth 

I think regarding family and friends who take a label that way that : (1) disclosing the label may sometimes be necessary to help everyone understand and feel included and (2) the reaction is to the label, not your child. 

Very true! We finally told dh's family when we were all having breakfast together when we were away last week on a family get together. DH didn't want anyone to know, but ds went into a full blown level 10 screaming tantrum (he was def having sensory overload after spending the night in the hotel, the awful plane ride the day before, and trying to eat breakfast in a huge open loud place). I didn't want them to think he was just a brat, and I told DH "that's it, either you tell them or I will, but I don't want them thinking he's a total brat!". My SIL said she would never have known it was asd, but then again she never sees him.
 

[JFTB1177]

Originally Posted by NiteNicole 

It's hard, but I do try to remember to cut people some slack.  Some people will say anything to avoid saying nothing and most of them really do want to be helpful or encouraging or sympathetic or whatever they think THEY would want to hear in your place (and some are just thoughtless).  Some people may be really raw and want the sympathy, some people probably DO want to hear about the kid who was just like theirs but is just fine now as an adult, some people may want everyone to be just as stoic and "no big deal" as they are.  People can't know what you want to hear and they mostly do mean well.

My biggest issue is what people say in front of my daughter.  I will cut off that "oh poor you" or worse, the horror stories, so fast it will make your head spin.

Very true... I guess I'm in the category that wants to hear about the kid just like mine who is fine now as an adult. I also don't want to hear sadness or pity, I just want them to have that information so they know why he may act a certain way or why he's not talking etc. I know people don't mean anything bad, I just hate the idea of being pitied or being a topic of gossip, etc.

What do you say when people say stuff in front of your dd?

[SpottedFoxx]

I agree that you should just tell them that isn't how you look at it.  

This summer, I bumped into my cousin at the pool.  She's not a very nice person in general so I tend to avoid her at all costs.  I mentioned something about my son's advocate at camp and she said "so does your son REALLY have specially needs?"  I replied "as opposed to fake special needs?  Yes, he has special needs".  She replied "oh, that is just soooo sad!".  I was furious.  I told her "look at my child, he's healthy, he's happy, he's smart, he's fun, everyone loves him.  Explain to me how my son is sad please.  Because there is NOTHING sad about him.  The fact that he learns differently than other children just make him different, not sad.  Don't ever refer to my child, or any child, with special needs as sad." and stormed off.  Now, unless your relative is a ____ (insert bad word here), I wouldn't recommend that course of action but it definitely got my point across.

[Linda on the move]

Originally Posted by JFTB1177 

I guess I'm in the category that wants to hear about the kid just like mine who is fine now as an adult. I also don't want to hear sadness or pity, I just want them to have that information so they know why he may act a certain way or why he's not talking etc. I know people don't mean anything bad, I just hate the idea of being pitied or being a topic of gossip, etc.

What do you say when people say stuff in front of your dd?

I wonder if sometimes people are just at a loss for what to say next. It isn't that they really feel pity, just that they are currently at a point in the conversation where they are supposed to say SOMETHING, and that's the best thing that comes to mind.

I try to read the best possible intentions in where ever possible. I think redirecting to the way that you are looking at the situation is really the best option.

People talk about my DD less in front of her now that she is older. If it is an ongoing thing, I'd address it politely with the person. If it is a one-time thing, I'd just let it go. I think our kids are far more tuned into to what we really think about them than a random comment from someone they see once a year.

Our all time low was when my sister looked my DD in the eye and said "I so wish you were different than you are. It would be so much more fun for the rest of us."  It was a few years ago, and I haven't seen my sister since. Some people really are icky, and avoiding them is IMHO best for our kids.

But most the time, as long as you are dealing with a decent person worthy of spending time with, redirecting them works well.

[JFTB1177]

Originally Posted by SpottedFoxx 

I agree that you should just tell them that isn't how you look at it.  

This summer, I bumped into my cousin at the pool.  She's not a very nice person in general so I tend to avoid her at all costs.  I mentioned something about my son's advocate at camp and she said "so does your son REALLY have specially needs?"  I replied "as opposed to fake special needs?  Yes, he has special needs".  She replied "oh, that is just soooo sad!".  I was furious.  I told her "look at my child, he's healthy, he's happy, he's smart, he's fun, everyone loves him.  Explain to me how my son is sad please.  Because there is NOTHING sad about him.  The fact that he learns differently than other children just make him different, not sad.  Don't ever refer to my child, or any child, with special needs as sad." and stormed off.  Now, unless your relative is a ____ (insert bad word here), I wouldn't recommend that course of action but it definitely got my point across.

LOVE LOVE LOVE what you said!!!!!!!!!!!! I will have to remember this!! Way to go, btw! :)

[JFTB1177]

Originally Posted by Linda on the move 

Our all time low was when my sister looked my DD in the eye and said "I so wish you were different than you are. It would be so much more fun for the rest of us."  It was a few years ago, and I haven't seen my sister since.

OMG!!!!!!!!!!!!!!!!!!!!!!!!!! Your own SISTER said this to your DAUGHTER?????? W-O-W. I love my sister but if she ever said anything like that to one of my kids I don't think we would be speaking either!!

[beachcomber]

Not much advice to give here. I'm in the same boat as the rest of you who've disclosed your kids' being on the spectrum. Either I get, "Oh, that's too bad!" or "Autism? I know this kid who's non-verbal and wasn't toilet trained until he was 6." or "I think my uncle the physicist has that. He's certainly unusual and doesn't like people. But hey, your DD could be a physicist!"

It drives me crazy. But I'm also one of those political types who wants to bring light to the fact that living on the spectrum doesn't mean these kids have a 3rd eye or antenna or tails. They're just kids with different issues, etc. I want people to stop thinking "Rainman" when they hear Autism. You know?

[2xy]

My older child has been in and out of therapy since he was 5yo. He's been labeled several times. ADHD....ODD...Bi-polar. None of the courses of treatment have really helped, whether behavioral modification or pharmaceutical.

So now he's 19yo, has no diagnosis, and people wonder WTF is up, you know? He's friendly, very intelligent, and funny. People like him. He could not care less about personal hygiene. His hair is past his shoulders, and he hasn't showered, combed his hair, nor changed his clothing in three days. I think he might have brushed his teeth once. He is terrified of making phone calls. He doesn't have a job and has very little desire for higher education at this time. And I know darned well that if I threw him out, he would end up a street person. He wouldn't "rise to the occasion" and turn his life around; he'd probably die in a gutter because he is incapable of self-direction and self-awareness. We think he has a personality disorder or three, but his new therapists haven't made any formal diagnoses yet.

I would LOVE to have a label for my kid, even if it made people say "oh, that's so sad." Because right now what people think, but don't necessarily say, is "your son's a loser and you're a shitty parent." Really, I've had to just grow a thick skin about how people view my kid.