Ever get tired of being told how strong you are?

[chickypoo2468]

First I was tired of the pity. Now I'm tired of the positivity lol. Like, once in a while I would like someone to just say "well that's just shitty" you know? I still don't want the pity, but like everyone is always "you're doing such a great job!!!!!" And I'm over here like I'm doing what I need to do and it all sucks ass.
Anyone else?

(I should add that we are still in the neverending testing and not knowing wtf is going on phase)

[mrsbuttinski]

Ugh.

Yes. Me, too.

[theycallmemommy]

Yes.

I've also replied that I am tired of being strong and just want a normal life for my son and got a blank stare from a few people .... which is probably the best response from them. MIL got all glitter and rainbows (she's still pretty hard core in denial about the ASD). A few weeks ago I gave the most honest response to her saying stuff to DH and i.

But we are almost 5 years since first suspecting ASD so I feel myself getting more blunt with my feelings if someone specifically asks. It feels good too if I can be honest. Sometimes you just have to say what you are feeling and not feel like you have to apologize you know? I know that it sounds a little Debbie downer but I love DS and would do anything for him and have so much hope for him but that doesn't mean I am a robot with no feelings about it all.

Big big hugs.

[Deleted]

Yes I hate that. I got it honestly a lot more with my high risk pregnancy and loss. I didn't ask for any of this to happen, so don't praise how strong I am. What are my options? At some point it's just living versus not living, and I was pregnant so again what were my options? Just get through the pregnancy. Oh and I got lots of I can't imagine. So that was fun too- made me feel like there life was sooo perfect and they never went through anything bad, and I was some kind of freak.

Afterwards there were some hard times. Lots of surgeries, but people didn't really say those things anymore. Oh I got one phone call telling me I was religious (I never speak to this person so how would they know?) and it was God's will. Well thanks for telling me heart surgery and if he passes away would be God's will.

Now mostly I just get a lot of ear ignorance. Like when I said DS got tubes my boss thought his Eustachian tubes were removed. Um wut? That's not even a thing. Or lots of other questions that are annoying but I guess people are really a lot more ignorant than I thought about hearing aids and language.

[BostonKisses]

Yep

[djtippietoes]

Yes. I feel like it's another way of people saying they don't think they could deal with the situation but, lucky for them, they don't have to.

[pipsqueak]

I did get a lot of "you're doing a great job/an amazing mom" comments from Pip's EI team/pediatrician when Pip was younger. I finally said "I'm just doing what every other mom does. Aren't I? and they responded "No." They've worked with too many families that didn't put effort into their child.

I don't get a lot of how strong you are comments related to Pip, but I did get a lot related to my older two in the last 8 years. They really bothered me because to me they were implying that I could/should have walked away from my kids. The comments decreased when I started responding with "So you think that abandoning my kids would be easier?" or something similar.

[Deleted]

Jan 14, 2017 14:35:50 GMT -5 pipsqueak said:

I did get a lot of "you're doing a great job/an amazing mom" comments from Pip's EI team/pediatrician when Pip was younger. I finally said "I'm just doing what every other mom does. Aren't I? and they responded "No." They've worked with too many families that didn't put effort into their child.

I don't get a lot of how strong you are comments related to Pip, but I did get a lot related to my older two in the last 8 years. They really bothered me because to me they were implying that I could/should have walked away from my kids. The comments decreased when I started responding with "So you think that abandoning my kids would be easier?" or something similar.

I got that too as a new mom or even pregnant. I did think that what everyone would do. Maybe I was wrong. Sometimes I got so smart- don't really want to be "smart" about this topic. Yeah and you are right- the alternative is giving my child up, watch them suffer or do my best to help them. Again not really a choice in my book of course I am going to act in their best interest. That is my job as their mom.

[luvboston]

Hell yes! It drives me nuts and makes me think very ill of others. People cannot fathom spending money that the insurance company doesn't pay for on their child or making themselves uncomfortable even for a short amount of time for their child.
Doctors have been pulling that crap with me lately and I just don't get how they think we wouldn't do everything in our power for our child so they don't end up more disabled or dead.

But I have to say being this strong takes a huge toll and I would like a 10 min vacation once and a while;)

[chickypoo2468]

Jan 14, 2017 15:35:12 GMT -5 @clarypax said:

Jan 14, 2017 14:35:50 GMT -5 pipsqueak said:

I did get a lot of "you're doing a great job/an amazing mom" comments from Pip's EI team/pediatrician when Pip was younger. I finally said "I'm just doing what every other mom does. Aren't I? and they responded "No." They've worked with too many families that didn't put effort into their child.

I don't get a lot of how strong you are comments related to Pip, but I did get a lot related to my older two in the last 8 years. They really bothered me because to me they were implying that I could/should have walked away from my kids. The comments decreased when I started responding with "So you think that abandoning my kids would be easier?" or something similar.

I got that too as a new mom or even pregnant. I did think that what everyone would do. Maybe I was wrong. Sometimes I got so smart- don't really want to be "smart" about this topic. Yeah and you are right- the alternative is giving my child up, watch them suffer or do my best to help them. Again not really a choice in my book of course I am going to act in their best interest. That is my job as their mom.

But being a shitty parent is an option any parent has, disabled child or typical child. And some people are. It's not like dealing with special needs gives you a pass and you don't really have to mess with it if you don't want to.

[chickypoo2468]

And I mean, like, if someone just tells me I'm doing a great job or it's like a general comment, I take it as a compliment. Because special needs is not all that I do. And it's nice to hear once in a while. But when I tell someone about the slew of new testing that we just decided to do and their response is "But you're doing such a good job!!" I just have no words.

[Deleted]

Yes it doesnt give us a pass. Sometimes it is more in our face, so we have to deal with it even if we don't want to.

And I do realize that some parents are not great or choose not to be no matter the circumstance.

I agree with you on timing. Normal timing then it's fine to say I'm a good parent. But yeah in the middle of a complex medical issue, I don't always want to hear that. I want to hear the best case scenario medically speaking. I want to hear that surgery isn't necessary and that we have been discharged from the hospital. I want to hear that we don't have to see a doctor for a year. I want to hear that a problem has been solved. I want to hear that the doctor understands and supports us and will do everything they can to help my son and that they are the best doctor to do this. There are so many things I would rather hear that I don't get to hear.

[freezorburn]

I guess for me it depends on the messenger ... if the words are out of pity then it's typically not a friendship or acquaintance that I invest a lot in.

If it's said out of support from a fellow traveler, it's more genuine and meaningful somehow. Because they Get It.

[toastie]

Jan 13, 2017 17:27:48 GMT -5 chickypoo2468 said:

First I was tired of the pity. Now I'm tired of the positivity lol. Like, once in a while I would like someone to just say "well that's just shitty" you know? I still don't want the pity, but like everyone is always "you're doing such a great job!!!!!" And I'm over here like I'm doing what I need to do and it all sucks ass.
Anyone else?

(I should add that we are still in the neverending testing and not knowing wtf is going on phase)

Yep, I sure as heck don't feel strong.  I get up, over my kids, take care of them and go to bed .  Just like every other mother. I don't have a choice.  It's not like I'm crusading for this, these are my kids.  And I'm just as tired nad fed up at times as everyone else. And sometimes I take a really long shower and sob because this is hard.