How do you deal with comments that deny or minimize your child's struggles? - Page 2

[ElsieLC]

I've been wondering about this, too. Sometimes I'm so baffled by how to respond that I say nothing, which makes it seem like there's nothing going on. But other times I'm tired of being the Ambassador for <Condition> and want to say something rude.

Is there a middle ground? If you've just delivered an asked-for explanation and someone says something dumb, how about, "You know, the hardest part of all this is that some friends don't grasp how much we're struggling on a daily basis and they say things that sound like they're trying to minimize what we've been going through."

In my quiet moments, I can think of all kinds of reasons people say dumb things (me included). I think people expect all stories to have a happy ending, and they don't know how to come in on the middle.

[JSerene]

This topic makes me so upset, I have a hard time posting anything at all.

My mother went so far as to say she thought I was making it all up. Some of the bad but slightly less hurtful comments are things like,
"she'll grow out of it"
"oh, so-and-so had allergies as a kid too"
"I've never heard of that disease" (in the tone of not believing in it.)
"well, there's got to be something she can eat"

My dd has an eosinophil disorder and can't eat any food. She gets a special diet through a g-tube. Her illness has a 3% remission rate, so no, she won't grow out of it. She has endured chronic pain since birth and many invasive procedures. To have her struggels minimized is very hurtful.

[AnalogWife]

Great thread! I haven't revealed my DS's dx (Autism) to my family because they've already made me uncomfortable with their uncomfortable "yeah, see! He's gonna be just fine!"s when DS's lack of speech wasn't the topic of conversation until that moment.

Last weekend I was having drinks with my friend and her dh, her DH was very open to my questions about his (from prev. marriage) 11yo DS's IEPs, Resource Room, Dx, etc. and since I felt comfortable talking to someone in-the-know and since I had a few drinks in me I announced DS's dx and my friend (who has two NT girls under 4) jumped in with "Well, at least you have a place to start!" which sounded so a) canned, and b) completely out of synch with the way the conversation was going. I didn't get it, was I saying I didn't know where to start? On the contrary, I was saying that I already knew what they were going to say and that I got the dx so's that we could get services. Since she didn't ask me any ?s about Autism, the only one she asked me was "How did it feel be presented with the diagnosis?" and never listened to my answer, I was pretty sure she wasn't interested in his condition or his self or details on his parenting/education, so I was sort of offended at her "Well, at least you have a place to start!" reaction because it was obvious that she didn't reallllllllly care about about our plight (or maybe she was just sick of the topic itself.) She's still my friend, though.

I do know that pre-DS, I was one of those people who was probably perceived as a minimizer, because I didn't want people to feel sad about their situations, it was naive, but I agree with PPs who have presented other sides of the issue.

[KimPM]

I think that people just don't know what to say, and often they just say whatever and don't think too much about what they said. They probably don't realize how minimizing their comments are. These are also people who have had absolutely NO experience with a child who can't or won't eat. They have only had experience with typical or nearly typical kids, so that's where they are coming from. We, too have been the recipient of these kinds of comments. At the time it was hurtful or just plain annoying, but with time I've realized the people offering their advice really just have no clue about your personal situation and think they are being helpful. It's probably best to just not respond much and move on.

[AndVeeGeeMakes3]

Originally Posted by KimPM

These are also people who have had absolutely NO experience with a child who can't or won't eat. They have only had experience with typical or nearly typical kids, so that's where they are coming from.

That's totally one of those, "If I had a nickel for every time . . . " sort of things. Sheesh. "Like, NO, I've never thought to offer her chocolate! Thanks for that suggestion. I've been so focused on trying to get her to eat broccoli and lima beans that it just didn't occur to me." And, "OH, you're right, I should make her sit at the table until she eats!" And, "Absolutely, peer pressure. That'll do it."

Clearly, I could go on.

[Adamsmama]

Can't post a lot right now but I've been there. I still am ... I can't stand it when people minimize what we've gone through and what DS goes through on a day to day basis. It is sickening how ignorant some "well meaning friends" can be.

[girlzmommy00]

I recently had a similiar discussion with my oldest DD's guidance counselor & then again with her case manager at school. I finally just said "no, she will not get better, this will not improve and will definately get worse, the only question is how quickly it will get worse" I was trying to put it nicely but realized they just needed it spelled out clear as day so there was no confusion. She's 16 and has ankylosing spondylitis & spinal stenosis in addition to a LD. She looks like the picture of health but is anything but.

I also hear it with my little guy. He's 6 months old & we highly suspect he has EE like my 10 year old did as a infant & toddler. She one of the unusual ones who outgrew it (she lived on Neocate only until age 3.5 yrs). When people hear he's on formula, they say "oh that's nothing unusual, my baby is on formula, too" or "my baby has reflux, too" I wish it was reflux. He can't have anything by mouth except Neocate (only wish I could just run to the store to buy more & it didn't cost 8 million $$ a can), no medications, no tylenol, no oral vaccines, no pedialite, absolutely nothing at all. If he gets sick, we're up the creek with out a paddle since the only way he can take medications is by suppository, shot or IV. Formula is common for babies, not being able to have anything else by mouth at all ever, not normal.

[SiobhanAoife]

I know that people are just trying to make me feel better, but I wish that people wouldn't respond to anything about my daughter's health with "well, but there's hope! medical advances are coming so fast! by the time she's older [at which point she is expected to require a double lung transplant to survive] they'll have lots of new treatments!".

Yeah, I know all about the medical advances, and I know all about all the reasons for hope -- way more than the uneducated laypeople who are saying these things! And I have that hope, and delight in my child. But it feels like they're trying to negate the impact of the fact that she has an incurable genetic disease and a life expectancy in the mid-30s. Stop telling me that doesn't suck. It does.

[*LoveBugMama*]

Big, big hugs to all the mamas here!! Reading what you all struggle with makes me humble. And, it makes me feel like I shouldn`t even be complaining.

As I have said, my son has no DX. I don`t know if he will get one, but last time we had someone here to look at our homeschooling (in Norway people from the county/state/whatever comes home to any homeschooling family a few times a year to see what the kid is doing, that every law is being followed etc.) they both (2 ladies in their 60`s, with lots of experience working with kids) reacted to something LoveBug did. He got really scared and confused because they suggested something to him that he wasn`t prepared for. So he locked himself in the bathroom for 30 minutes, crying. I was SOOO happy someone actually saw that, AND reacted. So now we have someone who will "testify" that this is not something we parents are making up.

Sorry, not relevant in this thread. But one of the things that makes me really angry/sad/frustrated is that whenever people minimize what he (and we as parents) are going through, they always use the fact that he has no dx as a way of saying that he isn`t really troubled, or that we are overreacting or something similar. And it really, really hurts. It hurts him, too. He knows that the evaluation didn`t show anything that could be diagnosed, and it makes him feel that they think he lies. And he sooo isn`t. And we aren`t. Seeing him at 6, hyperventilating and asking to die just isn`t normal. And when people try to tell me that "their kid can be scared/different/crying/angry, too" just isn`t helping. It feels offensive.

Sorry so long. This thread triggers something in me. Right now he is doing very well. (For him, that is.) But in the fall he will begin part-time school again, and I KNOW that he will be worse again. And we will struggle to get heard, seen and believed again.

[CherryBomb]

Yep, we've gotten this, too. The one that irritates me the most is "oh she'll grow out of it/she'll catch up!" I have to emphasize that she has SIGNIFICANT brain damage- half of her brain was killed completely by her stroke. You don't just "grow out of" that.

She's also seriously visually impaired and it makes me crazy when people say "why don't you get her glasses" as if I'm some kind of moron. Then I have to sit and explain how she has no issue with the structures of her eyes (which is what glasses deal with) it's a PROCESSING problem because she HAS NO OCCIPITAL LOBE! AHHH!! She did wear glasses briefly when she was a baby to help correct a strabismus, but they do nothing for her now.

I know most people are just trying to be helpful or encouraging, but they don't realize I have to deal with the same questions over and over every day. It gets irritating after awhile.

[lolar2]

Originally Posted by AndVeeGeeMakes3

Add me to the commiseration camp.

VeeGee is clearly very bright, but can't speak clearly and doesn't eat AT ALL (zero, zip, nadda) and is teeeeeeny and weak, etc., etc. etc.. We get a lot of, "Well, my kid's picky too." I want to raise up VeeGee's shirt and show them what kind of "picky" my kid is. But, I don't want to embarrass her, so I don't do that (anymore ).

This reminds me of my friend who got flack for using the "handicapped" stall in the bathroom, so she pulled up her shirt to show her ileostomy bag. She is an adult though, of course she wouldn't have done something like that with a child.