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Things You Are Afraid to Talk About
 

Healing Heart

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Joined: 2014-10-10 Posts: 701
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As special needs parents are there things you are really afraid to discuss with others or do you best not to discuss?

For me I think it’s discussing potential life-expectancy or trying to down play any concerns when my child is ill - it almost feels safer not to discuss it with people.  Are there things that you try to not discuss with other people or that you keep to yourself?  Do you think that is beneficial or healthy?  Or do you think we’d be better off telling people the entire truth of the matter?

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06 June 2017 11:41 AM # 1

ceriannbrown

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Joined: 2015-02-12 Posts: 2
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I think it depends on the context. I very much try to know my audience as some people are deeply shocked even just when i talk about amy’s birth or tube feed regime etc. Whereas there are people who don’t bat an eyelid and listen avidly and ask questions.

So I guess it’s about working out what your audience can handle!! Sometimes though you feel you have to let it all out and talk about those difficult things. I find it hard thinking about the future and how that will look. I worry a lot about if I died how her life would be, or if she died how I would cope. This is such a sensitive subject that I tend to not discuss it with anyone. Luckily we don’t expect Amy to be life limited but you always have it in the back of your mind that next time she aspirates could be serious, or that seizures could return, but I am trying hard to just get through day by day and appreciate the now rather than the what ifs.

Here if you ever need to talk x

09 June 2017 01:07 PM # 2

Kerry-Ann Fender

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Joined: 2015-06-26 Posts: 21
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I am wary of mentioning things that I know that other families struggle with much more than us. I try not to mention if we’ve had a bad night, for instance, because my son’s sleep patterns are usually better than so many others I know, it would seem churlish to complain.

I don’t talk much about his problems with chronic constipation on my blog. He’s getting older now and can read. I’m sure he wouldn’t want his poo habits splashed all over the internet, if you’ll pardon the phrase.

10 June 2017 03:25 PM # 3

Amumdoingherbest

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Joined: 2017-06-06 Posts: 8
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for my daughter we are new to her physical needs and try not to say anyrhing about her future as the drs aren’t even sure. I try to go very clinical and just give what the drs have diagnosed her with. I also don’t go into depths about the various tests and appointments and just skim and say ‘it was a good appointment’.

The main thing I struggle with is when people ask how she is and I generally just say ‘for her she’s ok’ they don’t need to know her feeding difficulty, her breathing difficulty, that she can now lift her head while doing tummy time etc as then I feel people feel bad for asking…. that’s just me personally. 

I’m more open in my blog as people can skim the bits they feel uncomfortable with however my older boy with ASD I talk more through rose tinted glasses as he doesn’t need to read certain things (if he ever say the blog) plus I don’t want people saying things to him to make him feel even more different.

12 June 2017 04:04 PM # 4

Healing Heart

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Kerry-Ann Fender - 09 June 2017 01:07 PM

I am wary of mentioning things that I know that other families struggle with much more than us. I try not to mention if we’ve had a bad night, for instance, because my son’s sleep patterns are usually better than so many others I know, it would seem churlish to complain.

I don’t talk much about his problems with chronic constipation on my blog. He’s getting older now and can read. I’m sure he wouldn’t want his poo habits splashed all over the internet, if you’ll pardon the phrase.

Awwh I fel bad that you don’t want to complain because you know others have it worse.  I think that puts all of us in a censored box when we do that.  I’ve even been guilty of doing that myself… don’t complain because your child is still living when you know someone who lost their yesterday… etc.  But I think we’re doing a disservice to ourselves when we do that, we’re trying to convince ourselves that it isn’t okay for us to realize that we individually each have it hard.  There should never be a comparison it should be the freedom to say my day was hard whether my child sleeps 8 hours or 2 hours. 

My son can’t read and likely will not know of my blog unless it is read to him, although he is cognitively very aware, I don’t feel he’d necessarily care about the involvement of such details.  Knowing how I am I think both of my children kind of take a candid honest and truthful take on everything and I’d like to think he would be more proud than embarrassed that I chose to discuss such topics with others.

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12 June 2017 04:06 PM # 5

Healing Heart

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ceriannbrown - 06 June 2017 11:41 AM

I think it depends on the context. I very much try to know my audience as some people are deeply shocked even just when i talk about amy’s birth or tube feed regime etc. Whereas there are people who don’t bat an eyelid and listen avidly and ask questions.

So I guess it’s about working out what your audience can handle!! Sometimes though you feel you have to let it all out and talk about those difficult things. I find it hard thinking about the future and how that will look. I worry a lot about if I died how her life would be, or if she died how I would cope. This is such a sensitive subject that I tend to not discuss it with anyone. Luckily we don’t expect Amy to be life limited but you always have it in the back of your mind that next time she aspirates could be serious, or that seizures could return, but I am trying hard to just get through day by day and appreciate the now rather than the what ifs.

Here if you ever need to talk x

Perhaps that is my challenge - my audience.  I think my audience is so big that I set myself up for unnecessary judgment and unsolicited advice.  I no longer have the quiet safe place to vent or expect someone just to say I’m here for you… instead I get critiqued and evaluated… and in some cases even scolded because I’m not being “positive” enough for everyone.  Yet I still want to in some way expose the world to what I’m feeling and what special needs parenting is like and educate them - bring awareness and not hide in a closet - yet being open and honest seems to come at a price - which in turn has the very potential to make me feel even worse.

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