# Aaaaarrrrgh!



## HBGirl

Why is it that people with typical kids feel the need to one up you?

I am having a roughbtimexwith DH at the moment. He is no help at all and I get NO breaks from parenting. DD has been up all night two nights in a row and is sleeping badly period.

I post a moan on facebook saying "my child no longer sleeps, my house is a mess and I get no help". My one "friend" writes "well, I have 2 kids, a 4 bedroom house, 2 cats, I WORK, and do all the cleaning".

WTF???? Your kids are not trached and profoundly mute! I would have LOVED to go back to work but my daughter needs 24 hour nursing. I cannot be more then eye distance from her EVER! 

Stupid bitch!


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## alibaba24

I have day's where I feel like this although my daughter is a bit more independent it's that whole thing .... Oh so you had a bad day ,? Let me tell you how bad MY day was !


Grrr


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## HBGirl

I don't like mommy wars but try to one up me with your "normal" life, I see red. Being a mom is hard and not a competition.


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## Thurinius

Sandy toksvig had a great line about this sort of pressure on women, which is sorta connected.

"If you are a woman without children you are cold and heartless.
If you are a woman with children who works you are selfish.
If you are a woman with children who stays at home you are lazy."

There is no winning and we are always being judged whatever.
HBGirl hope things improve for you soon,


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## sequeena

There's always one unfortunately :(


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## Midnight_Fairy

I just think 'STFU' in my head lol


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## HBGirl

My response.

OK, I am saying this. I would have LOVED to go back to work. I can't. My daughter needs 24 hour nursing. I would LOVE to get stuck into the house and clean from head to toe but my daughter is profoundly mute and needs to be in eye shot of mr 24 hours a day. I can't sleep deeper then just under the surface because the only way I know she needs me is by hearing minute changes in her breathing. I cannot leave her with a nanny because she needs a tracheostomy trained nurse with her at all times. I am that nurse. Having a medically complex child who is mute is a blessing and no, I would nit change her for the world but I am also human, I habe lost who I am in sacrifice for her. Having two typical kids, cats and working sound like bloody heaven to me!


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## Midnight_Fairy

Hugs hun. People like to moan, often without thinking. If you think she will take note then post it but otherwise don't let her negativity zapp your energy.


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## HBGirl

Oh, I posted it. She came back with this.

I would LOVE to be able to stay home with my kids 24/7 but I can't. We are not fortunate enough to be in that position. I have to do my fair share or we would be in financial trouble. I think staying home with my kids sounds like heaven. 

Nevermind DH and I have had to sell things and didn't make rent last month because I had to quit my job to nurse DD.


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## AnneD

I'm sorry your friend is so insensitive. I hope your DH starts pulling his weight.

Xx


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## sequeena

It's best you step away I think as she clearly has no clue and doesn't want to have a clue or to understand how life is for you with an additional needs child. She sounds extremely selfish and the type of person who has it worse than everyone else but is oh so amazing and can do everything.

She's just not worth it. There are sadly people who think like this all over the world. Surround yourself with those who understand what you are going through. The rest don't matter.


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## HBGirl

Yep, I have deleted her. I never see her, she lives in another country.

DH heard me out after I lost it last night. He has been better.


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## Tiff

How rude!!!! :growlmad:

That makes me so mad. I have a few people in my life who constantly try to either dismiss the stuff I go through with my daughter (under the "all kids do that" idea) or give me the "must be nice" when I stayed at home with her for the first 3 years of her life. 

It wasn't "nice". We were used to a certain amount of income, but with her needs and the cost to have someone who was experienced to watch her would be more per hour than what I'd make if I was working at the time. Even now, I work part time. My hubby works during the day, I work evenings and weekends. We don't really see each other throughout the week but that's a sacrifice we made as a family.

Its not "nice" to sit with a child who has extra difficulties, and watch your friends children progress as they should, and see your child struggle and fall behind. It isn't "nice" to see all of their kids be invited to birthday parties whereas your child comes home crying because she's not allowed to go. 

It isn't "nice" to constantly question how you are doing with your child, if there's more, did you not read enough, did you not do enough, did you not, did you not, did you not... so on and so forth. Because as a parent it is so much easier to blame yourself rather than to think your child just can't do it at this time.

Ugh, it makes me so mad. Sorry, not having a good "autism" week (if you can call it that). I think you did the right thing with cutting her loose. The people who matter, will give you a hug, comment with support or ask how they can help. You have enough on your plate rather than feeling like you have to justify the hand that life dealt you. <3


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## BlueHadeda

Wow. I'm stunned. The first message I can still _sort of_ understand. She may have been in a bad mood, etc. But her 2nd reply, wow, how utterly mean! She had absolutely zero empathy with you. Definitely not worth being friends with someone like that. Still, it must've hurt. We have all lost friends because of our children's special needs, and their lack of understanding and support. We know how you feel. :cry:

Btw, I think I've put 2 things together from your posts on here. Your baby has 22q, and you're in South Africa? I'm from SA!! Living in Centurion. My daughter was tested for 22q earlier this year, but she tested negative. We decided to take a break (financially it was too draining), and will look into whole genome sequencing next year. Maybe micro array, but the geneticist thought the whole genome would more likely result in some answers.


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## HBGirl

Yep, that's me. My DD was only tested for 22Q. I knew it was what she had so requested it directly.


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## BlueHadeda

HBGirl said:


> Yep, that's me. My DD was only tested for 22Q. I knew it was what she had so requested it directly.

That's interesting! How did you know? Is it something in your family?

I only heard about 22q for the first time last year, when my daughter's psychiatrist mentioned it and sent us to Professor Louw in Weskoppies.


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## HBGirl

Research I guess. I knew it wasn't CHARGE so that left 22Q.


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## kosh

BlueHadeda said:


> *Wow. I'm stunned. The first message I can still sort of understand. She may have been in a bad mood, etc. But her 2nd reply, wow, how utterly mean! *She had absolutely zero empathy with you. Definitely not worth being friends with someone like that. Still, it must've hurt. We have all lost friends because of our children's special needs, and their lack of understanding and support. We know how you feel. :cry:

^^ this. The first one was bad enough but as pp said, it could have been a bad day etc, but her second message after your replies is the most insensitive comment ever. Please get rid of her
:hugs:



BlueHadeda said:


> Btw, I think I've put 2 things together from your posts on here. Your baby has 22q, and you're in South Africa? I'm from SA!! Living in Centurion. My daughter was tested for 22q earlier this year, but she tested negative. We decided to take a break (financially it was too draining), and will look into *whole genome sequencing* next year. Maybe micro array, but the geneticist thought the whole genome would more likely result in some answers.

Funnily enough this is what I do for leaving as part of a research project. If you want to give me details of your LO's symptoms I might be able to help you get in touch with a team working on that particular condition and recruiting patients? (ie getting the WES done for free). PM if you want :flower:


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## lusterleaf

Ugh I mean really she shouldn't have said anything. I work because I have to but I would never ever put down someone who didn't work. Everyone is in a different situation. Especially when you have a child with special needs. Sometimes I wish I had the problems that parents of non-special needs have with their kids!


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## PresqueVu

That's pretty dire!

Some parents want to stay away from us because of our situation, but it's actually a good way of filtering out people that aren't ones we'd like to know.

I can't imagine how strong you must be. Good on you for deleting her, that kind of attention is just a needless hassle. :flower:


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## BlueHadeda

kosh said:


> BlueHadeda said:
> 
> 
> Btw, I think I've put 2 things together from your posts on here. Your baby has 22q, and you're in South Africa? I'm from SA!! Living in Centurion. My daughter was tested for 22q earlier this year, but she tested negative. We decided to take a break (financially it was too draining), and will look into *whole genome sequencing* next year. Maybe micro array, but the geneticist thought the whole genome would more likely result in some answers.
> 
> Funnily enough this is what I do for leaving as part of a research project. If you want to give me details of your LO's symptoms I might be able to help you get in touch with a team working on that particular condition and recruiting patients? (ie getting the WES done for free). PM if you want :flower:Click to expand...

O thank you!!! :hugs: I missed this post, thank goodness I saw it now. It's a bit late at the moment here (after midnight), but I'm going to pm you tomorrow. Thanx again!!


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## kosh

BlueHadeda said:


> kosh said:
> 
> 
> 
> 
> 
> BlueHadeda said:
> 
> 
> Btw, I think I've put 2 things together from your posts on here. Your baby has 22q, and you're in South Africa? I'm from SA!! Living in Centurion. My daughter was tested for 22q earlier this year, but she tested negative. We decided to take a break (financially it was too draining), and will look into *whole genome sequencing* next year. Maybe micro array, but the geneticist thought the whole genome would more likely result in some answers.
> 
> Funnily enough this is what I do for leaving as part of a research project. If you want to give me details of your LO's symptoms I might be able to help you get in touch with a team working on that particular condition and recruiting patients? (ie getting the WES done for free). PM if you want :flower:Click to expand...
> 
> O thank you!!! :hugs: I missed this post, thank goodness I saw it now. It's a bit late at the moment here (after midnight), but I'm going to pm you tomorrow. Thanx again!!Click to expand...

No problem, I'm happy to help! I was wondering whether you might have missed it!


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