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

[Wild Lupine]

DS has dysphagia, which we've been trying to get help for for months. A few days ago we received the results of his swallow study, which we're pretty scary. He aspirates just about everything, and doesn't have much of a suck or a chew (which may be due to low muscle tone). His feeding specialist said her goal right now is to make sure he gets enough nutrition and hydration in a safe way, and that trying to think about solids would come later, and would probably involve invasive tests to figure out what is happening in his throat. She mentioned the possibility of a laryngeal cleft.

What this looks like in practice is that we have to thicken all liquids and feed him through a Y-shaped nipple, and he struggles to consume it because his strength is so low. He also will throw up if he tried to swallow anything remotely solid; he can eat vanilla yogurt and that's about it. He will be 2 in six weeks and knows exactly what he is missing, so we have a lot of food related meltdowns.

When we received the results I thought people who had been minimizing his issues would understand more about what we're going through, but I'm still encountering denial from some friends and family. I have no idea how to respond to this; I've accepted that not everyone is going to be able to offer the same degree of support, but I don't know how to respond to things like this, said after I've explained what is going on:

"If he can eat yogurt, there can't be a problem; I'm sure he can eat other things, too."

"That's what most kids his age are eating, he's not much different."

"He'll outgrow it. No one passes up food for too long."

"But he looks fine, so this can't be impacting his life too much."

They irk me so much my knee jerk reaction is to be rude, but I'd rather not!

[QueenOfTheMeadow]

My oldest son is on the Autism spectrum. But if you only spent a little time with him, you might just think he's a bit quirky or, depending on the day, just really badly behaved. You don't see his struggles or the struggles we face as a family.

I've had friends say, "Oh, he'll grow out of it." or "all kids do that sort of thing sometimes." My favorite was when I had to pick him up at school and I was trying to calm myself down at work before I left. I said to a friend, "I have to keep telling myself, that this is part of his special need and when he gets this upset, he really can not calm down. He needs me not to be angry with him right now'" She looked at me and said, "You can't blame everything on his supposed disability." Yeah, I just walked away really angry and I don't consider her a real friend anymore. I'm so angry right now just thinking about it!

I suspect some people are just trying to make you feel better, like, "oh, it's not that bad. It'll get better." Misguided, but probably from a good place.

And then there are the other type who just don't want to get it and would prefer to make you feel like you're overreacting or a bad parent than to take the time to actually learn about what you are going through.

I think the first type, if they are close to you, you could probably give them information to read. The second type, I think cutting them from your life might be the only way to deal.

[rlandnl]

I don't have any advice, just hugs. Because I go through the same thing. My son has ASperger's and anxiety, he is VERY intelligent, and very precocious in his speeh. Because of this when people find out about his diagnosis, or family comment on it, they tell me well he can't have it "that bad" look how much he can say. Everyone automatically assumes all autistic kids are mute. Yes he is smart, yes at 2nd grade he can read and do math of a 4th grader, yes he can speak better than most adults, with better grammar, but that sets him apart EVER MORE socially. And you think he's so minimal, take him out in public, see how he can't handle even a small trip to the grocery store without FREAKING out because his anxiety gets the better of him. Take him to playdate where he starts pummeling children because "they get on his nerves" ie he isn't 100% in control.

I know how frustrating it is, you just want some acknowledgement. But I think people are scared. they don't want to admit someone they care about might not be perfect. They need to get over it. They don't realize how defensive we feel when they do that.

*hugs*

[SpottedFoxx]

I think my standard response to crazy statements applies here...

"what an odd/rude/strange, etc. thing to say". Pause, if they don't respond just walk away and if they respond with a "Huh?" use that moment to educate them...

"well, you are acting like this is a behavioral issue and it's not. My son has a medical condition that makes it very difficult for him to eat and absorb nutrition. While you may think he looks/acts healthy, this is a serious, test confirmed issue. Please stop trying to minimize what my child is going through".

Or you can use the one I like to use on my mother "are you questioning my parenting skills?". That one usually does the trick too.

{{{hugs}}}}

[HealthHomeHappy]

I usually correct them. Mine is my ASD 3-1/2 year old who has inappropriate meltdowns, is on a special diet, can't talk. When people say something to me (like my favorite... this too shall pass.. or 'well, she'll learn eventually') about her growing out of it, I say that no, actually she won't just grow out of it, she needs help to work on her development so that's why we're doing speech/floortime/OT/keeping her in the Ergo when I know she'll be overstimulated.

I have some people who honestly don't see much of a difference in her and other kids because they don't pay attention to that kind of thing. And then others who know there's something different, but it makes them uncomfortable so they're in denial.

[*LoveBugMama*]

I`m sorry they are clueless!


My son has no dx. (Yet?)
But he very clearly has issues, like anxiety, ocd`ish periodes, several traits from Aspergers, a lot of worries (think GAD).
And most people don`t get it. Or don`t want to get it. I get comments ALL the time, when we try to tell people why he won`t go to a friends house, or go alone to the bathroom, or to school, or when he freaks out because he is so worried over something etc. Or when he can`t seem to get why his friend is pissed, because of something my son did/said.

People either think I am just an hysterical mama, or they think my son "clearly just needs to be forced to do XYZ by himself."
The only ones who seem to understand are parents of other SN-kids, my mom (who works with people with different special needs), and a very few familymembers who has kids with anxiety themselves.

[sncmom]

No great advice for you, just commiseration. This is probably my DH's pet peeve. He could go off on this for hours! My DD2 has cerebral palsy and delays. However, she has a wonderful smile and no tubes or O2, and when in the stroller looks like most other kids her age. People have been minimizing her and our challenges since the day we brought her home from the NICU with an NG-tube, even and maybe epecially our families. It is very frustrating. I think many people just don't want to acknowledge that bad things can happen for no reason, so they try to not see the bad thing.

With our families, we just force them to recognize what things are really like in our day to day lives and don't let them minimize it. This can be an uncomfortable process, but we feel it is important to keep the relationships honest. With strangers, I tend to just say nothing. but when feeling bitter want to say "Well how would you feel if _____, your youngest, had a near drowning incident and couldn't walk or talk and you wouldn't know for years if s/he would ever be able to? Would you then think everything's ok because you saw a smile?" I haven't done it yet, but have been tempted several times when people are being falsely

Anyway, a babbling way to say that I get it and you are not alone. Big hugs.

[Wild Lupine]

Thank you everyone. I'm sorry you have all been there with this! All of your responses are so supportive and validating.

Originally Posted by QueenOfTheMeadow

I said to a friend, "I have to keep telling myself, that this is part of his special need and when he gets this upset, he really can not calm down. He needs me not to be angry with him right now'" She looked at me and said, "You can't blame everything on his supposed disability."

Ouch, What an awful thing to say! I wouldn't consider her a friend anymore, either.

Originally Posted by QueenOfTheMeadow

I suspect some people are just trying to make you feel better, like, "oh, it's not that bad. It'll get better." Misguided, but probably from a good place.

That is what I think is going on with a lot of this, people trying to reassure me to be helpful. It's why I'd like to find a response that isn't rude.

Originally Posted by SpottedFoxx

I think my standard response to crazy statements applies here...

"what an odd/rude/strange, etc. thing to say". Pause, if they don't respond just walk away and if they respond with a "Huh?" use that moment to educate them...

That's perfect. Thanks!

Originally Posted by *LoveBugMama*

The only ones who seem to understand are parents of other SN-kids, my mom (who works with people with different special needs), and a very few familymembers who has kids with anxiety themselves.

That's what I have found, too. I am so glad this forum is here!

[MotherWhimsey]

I think that people don't want to be forced to see that bad things happen to good people and innocent children, so it's easier for them if they are in denial about how big of an issue it is. As soon as they "get it" their bubble is burst, so they hang on to the thought that it isn't so bad and don't even consider the cost to you.

I have found that the older ds gets, the less public we are about any of it. I guess you just get disillusioned with people and don't really care to include them in that part of your life so much anymore. I don't know if that's a good way of handling it or not, but that's just kinda what has happened around here. Our families are really good about everything though (but tend to overreact, so we are more quiet now with them for the opposite reason).

[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 ).

These days, I just kind of give a half-smile and don't say anything at all. As in, I don't respond one way or the other. Silence.

I think people are mostly trying to be nice and encouraging, but, yeah, it comes off as really inconsiderate. They don't know what it's like, so they try to, in their own way, commiserate with you. For them, the fact that their kid *really* doesn't like anything but yogurt is hard enough. I certainly don't wish for them to *really* know how it feels, ya know?

[Zan&Zav]

[QUOTE=QueenOfTheMeadow;15566524]
She looked at me and said, "You can't blame everything on his supposed disability."



This, this is the worst comment I have ever recieved and still recieve

[QueenOfTheMeadow]

Aww, thanks for all the hugs!

[PuppyFluffer]

I pop in to this forum once in a while for several reasons.
I want to tell every mother here who has ever had a comment like the ones above that I GET YOU (as much as someone who has not been in your shoes can)! The way you parents have shared your lives and your stories has taught me so much. The ignorance of the masses to the trials of a special needs child and their family is widespread.
Please know that there ARE some people "out there" that are understanding.
I watched a mother struggle with a full grocery cart and a young boy totally coming unglued about having to put his coat on. I was two or three people behind her in line and the nasty comments about the boy's behavior were shocking to me. I got my few items and came up to her and asked if he would settle down better if she could give him all her attention. I offered to stay with her grocery cart in the door way while she got him into his carseat and pulled her car up to the curb. (It was wintry cold out, otherwise I would have just pushed her cart for her.) She was so appreciative and her boy settled down rather quickly once removed from the bright store and into their car. She was really grateful for an understanding helpful hand. I was glad to help.
There is so much ignorance and people love to make negative judgements.
I wish helpful strangers upon you all! Heck, I wish them upon all moms out in public sith small kids. Sometimes, you just need that understanding helping hand. I wish there were more of them.

[Kristine233]

Originally Posted by SpottedFoxx

I think my standard response to crazy statements applies here...

"what an odd/rude/strange, etc. thing to say". Pause, if they don't respond just walk away and if they respond with a "Huh?" use that moment to educate them...

"well, you are acting like this is a behavioral issue and it's not. My son has a medical condition that makes it very difficult for him to eat and absorb nutrition. While you may think he looks/acts healthy, this is a serious, test confirmed issue. Please stop trying to minimize what my child is going through".

Or you can use the one I like to use on my mother "are you questioning my parenting skills?". That one usually does the trick too.

{{{hugs}}}}

Haha, yes, love it.

I think just about every SN parent has been there. There will always be people who feel that "minimizing" things is helping the person dealing with it. It doesn't help, obviously. But the person doing it "thinks" they are helping. Its frustrating. Of course, you always have the ones who are just insensitive too, lol.

My MIL used to always comment on how I was just too lenient with DS, I needed to be stricter. She simply didn't take his DX serious at all. When she moved near us I was looking for a PCA. I trust her with him and she had a background doing home health care, so I thought it was the perfect time for her to finally really "meet" the true Andrew. The honeymoon period was over after 2 weeks and she got to experience what we do everyday. She came to me and apologized for doubting us and learned as much as she could about Autism. It was my mini victory. She is now in year 3 of being his PCA and I couldn't have a more supportive MIL who now understands the struggles he faces everyday and what it means within our family. In fact, now she takes him overnight at her house at least once a week to just give us a break.

My point is, don't give up yet and don't let them bring you down. You know your child and they don't. You get to see and appreciate your child's accomplishments while others stand by and wonder what the big deal is. For me, that's huge, the ones who don't understand are the ones missing out and I wont let their negative attitude taint that experience for me. *hugs mama*

[PNWmama]

Originally Posted by PuppyFluffer

I pop in to this forum once in a while for several reasons.
I want to tell every mother here who has ever had a comment like the ones above that I GET YOU (as much as someone who has not been in your shoes can)! The way you parents have shared your lives and your stories has taught me so much. The ignorance of the masses to the trials of a special needs child and their family is widespread.
Please know that there ARE some people "out there" that are understanding.
I watched a mother struggle with a full grocery cart and a young boy totally coming unglued about having to put his coat on. I was two or three people behind her in line and the nasty comments about the boy's behavior were shocking to me. I got my few items and came up to her and asked if he would settle down better if she could give him all her attention. I offered to stay with her grocery cart in the door way while she got him into his carseat and pulled her car up to the curb. (It was wintry cold out, otherwise I would have just pushed her cart for her.) She was so appreciative and her boy settled down rather quickly once removed from the bright store and into their car. She was really grateful for an understanding helpful hand. I was glad to help.
There is so much ignorance and people love to make negative judgements.
I wish helpful strangers upon you all! Heck, I wish them upon all moms out in public sith small kids. Sometimes, you just need that understanding helping hand. I wish there were more of them.

Oh, if only you had been at the grocery store the other day when my son was melting down and I was trying to drag him, my 15 month old, and a 20 lb bag of cat food out the door. Everyone avoided eye contact with me. I mean, how hard is it to simply offer to open the door for a struggling mama? Thank you for your understanding and kind-heartedness


I get comments all the time about my son's condition (ASD), and I never know what to say. Usually I just get so flustered and angry that nothing would come out sounding right anyway. My in-laws are the worst. "He'll grow out of it", or "oh, all kids are like that sometimes" or "sometimes you need to say no and mean it" or "he just needs a spanking". arrrrrgggghhhhh!!!!! No, he won't grow out of it, no he does NOT need a spanking for melting down because of a sensory issue (nor does he ever need a spanking for anything!). I'm so tired of people thinking that I'm a bad parent and not believing that his autism is real.

[SpottedFoxx]

Originally Posted by PNWmama

I get comments all the time about my son's condition (ASD), and I never know what to say. Usually I just get so flustered and angry that nothing would come out sounding right anyway. My in-laws are the worst. "He'll grow out of it", or "oh, all kids are like that sometimes" or "sometimes you need to say no and mean it" or "he just needs a spanking". arrrrrgggghhhhh!!!!! No, he won't grow out of it, no he does NOT need a spanking for melting down because of a sensory issue (nor does he ever need a spanking for anything!). I'm so tired of people thinking that I'm a bad parent and not believing that his autism is real.

Amen sister! My mother tells me that my sons just needs a good swat on the behind. I told her that if I ever found out she raised a hand to my son, it would be the last time she saw any of us. She tells me that I went to the opposite extreme (she used to beat the %@#$ out of me). I told her that hitting a child teaches nothing but fear, violence, pain, etc and that's not a lesson I want my child to learn. He will learn consequences and discipline but without the use of force.

Puppy - you are a good soul. We need more parents to behave this way. DH used to give me grief about helping strangers (calls it my Wonder Woman syndrome). I just ask him what he would want to happen if he were in that situation.

[earthmama369]

I generally give them a flat look and say, "Well, five highly trained professionals feel that this is a real problem."

It depends on intent. Sometimes people say really clueless stuff because they want to help but they feel helpless or just aren't sure what to say. I get that. I've had foot-in-mouth disease, too. But when they're just trying to minimize my instincts and ds's struggles, I don't see the need to coddle their feelings just so it can happen over and over again. I'd rather set the record straight and move on from there.

[bestjob]

I'm like PuppyFluffer, just an occasional visitor. And a huge admirer.

Sometimes the one-off responses might make you feel better, but I kind of wonder if they actually help in the long run. Otherwise, they might seem like insults, which isn't really going to further understanding.

Sometimes people are too caught up in their own worlds and they are hard-eyed and judgmental because they aren't fully engaged in the moment they're living. They're thinking about work/school/family, not you.

My one suggestion would be to look around, catch the eye of the one or two people who are looking semi-sympathetic and ask for help.

I know asking is hard, hard, hard. But even if they say no, what have you lost but a few seconds?

If they say yes, you have the help you need and a non-confrontational opportunity to educate.

[alexsam]

Honestly, I think there are different reasons why people might say this and I think that many of them are well intentioned, if off (not making excuses, just replying honestly).

I think people don't want to "think about bad things happening"

I think people try to "bond" with their own experiences, and many have not had this experience. I was in a resteraunt with a child who was having a major freak out and was older than the usual freak out age. As they were making a hasty exit of the place, the grandmother clearly was flustered and said to the onlookers apologetically "He has autism..." I said "We've had store freak outs too... It happens." My intention was to say "Even if he didn't have autism, we've experienced what it is like to have to leave someplace with a screaming kid and everyone looking and that you are not alone and it is not terrible." Minimzing? I hope not! I certainly didn't mean it that way.

I think sometimes people want to give you hope. It is misguided and naieve, but I think that is sometimes the intention.

I think they can't see all the fascets. They may see the food and a healthy kid and don't think about how dangerous it is or even birthday parties when LO wants cake or traveling or what it takes to plan ahead or the doctors appointments or all that. They truly cannot imagine it. My niece has celiac disease. No gluten. None. At all. Her food cannot be processed in a facility that processes wheat. They can't even cook with pots that have had it in there. They have to read shampoo labels and toothpaste. My niece is (now!) a strong, active, happy 3 year old. So people think "Eh, not such a big deal." But they cannot imagine what she was like before, what could happen to her with permanent damage to the intestines and what it is like to be sure she does not consume gluten in any form. So, they minimize it.

They want to protect (or comfort) the child or you. Again, misguided and naieve, but there are a lot of people who think if you are "normal" then that is good and safe. It is under the "The other kids won't make fun of you" umbrella . And, they try to comfort you by saying it is "normal".

They don't want to "pity" (we're all clear on that is *bad*), but they are not sure what is the "opposite" of that is, so they pretend it is not a big deal.

They don't know what else to say. They do not have the medical background or the practical experience, and so that takes away many of the "easy" statements for playground casual conversations or others who are closer but less artful in conversation. So they say it, quite literally, because they don't know what else to say.

And then, there are people who just don't get it, don't care, are protecting their own emotions so they respopnd to that and not really to you, and then there are people who are just mean (though I think this is a very small minority, just my experience).

Regardless, I'm sorry. It's lousy to have something so big in your life that seems so invisible to others....

[pixiekisses]

Oh, how well I remember that. My little miss cotton ball button didn't get her g-tube until about 2.5 yo. And before that everyone thought she was just picky. She was aspirating everything, and when we discovered how bad it was she was actually not allowed to eat orally anymore.
Everyone used to say it would pass, and that it was normal for her age etc.
When she got the g-tube it kinda shut them up.

I'm sorry you have to go through it.

Originally Posted by QueenOfTheMeadow

She looked at me and said, "You can't blame everything on his supposed disability."

Oh my, are you serious?! Or, I know you are. But oh my. I can't wrap my head around that one. I'm so sorry!