to be fed up with people saying " how do you cope, I couldn't you must be really special"

[2shoestrodonalltheeggs]

ok so dd is severley disabled but that doesn't make me specail, and what am I suppsed to do......not cope!!!

Been thinking about this and I think that this is one of the fab things about MN. It's been posted before on an infertility thread (the "just relax" one) - most people are really well-meaning and don't say things to be offensive, even if when you think about the implications it can be incredibly insensitive. And the nice people going through whatever-it-is aren't going to be blunt enough to correct them. So MN can educate us all about what it's like to go through infertility/miscarriage/having SN children/divorce/bereavement and we can all stop saying daft things. I certainly didn't really think about miscarriage and all it really meant until I found MN. I hope that it has made me a better friend.

I think YANBU because that is how you feel about it. But....I really do think that most people mean well, they just don't get the words out properly...maybe some of them aren't intelligent enough to work out what to say. Although, in life, we do get some unthinking people who just come out with whatever they feel like

I also had an awful comment about my dd when in hospital, by a midwife. I have never forgotten that comment so i can really empathise with you on how others comments can make you feel.

My DS2 has a life limiting condition. You would not know he is any different from any other child or his brother to look at him.
The thing i struggle with is people only know if i tell them. So the grief and pain i have felt go unnoticed or seen as me being a moody cow at toddlers again.
At times i needed someone to say you are coping so well how do you do it.

I don't want my child to be treated differently, to be felt sorry for, or seen as a burden, he is my son and he is who he is.
However, who he is has affected me and my relationships with my DH, with my DS1 and my friends and family and to have that acknowledged is important.

People don't know what to say but i think we have to be honest in our reactions. Of course they could cope because they would have to. But yes they are right it is challenging (4 hours sleep a night)and heartbreaking(broken at birth).

So i don't think you are being unreasonable to be annoyed but don't moan about it just tell people how it is.

I think they are actually saying that they could not imagine themselves in that position.

I get that comment for being a single parent at uni full time, and working part time, which really pisses me off because I generally don't 'cope', I muddle through because that is the way it is!

But it is a compliment I suppose!

Chegirl - I am so sorry for the loss of your daughter. Your daughter was beautiful, i looked on your profile i hope that was ok.

I have a DS with low functioning autism and have had this a lot particularly from MIL who just keeps saying "Its all so sad".

I liked the mother at the swing article too.

I also don't like the Amsterdam/Italy one or the Beirut one either - just makes me feel more ostracised.

My nephew is severly autistic (from brain damage not long after birth).
My sister gets these comments all the time, and I even think them now and again.

Translated, these comments mean "thank god i don't have to cope with autism/whatever..."

I do think most people are trying to be kind.

Thats as maybe but it does come across as "I'm alright Jack"... i think it translates as "Thank God I don't have to cope with autism/whatever..."

Would someone mind explaining Amsterdam/Italy, and Beirut please? If you have time.

I'll find it

WELCOME TO BEIRUT by Susan F. Rzucidlo

(Beginner's Guide to Autism)

"I am often asked to describe the experience of raising a child with autism-to try and help people who have not shared in that unique experience to understand it, to imagine how it would feel. It's like this.."

There you are, happy in your life, one or two little ones at your feet. Life is complete and good. One of the children is a little different than the other but of course, he's like your in-laws, and you did marry into the family. It can't be all that bad. One day someone comes up from behind you and throws a black bag over your head. They start kicking you in the stomach and trying to tear your heart out. You are terrified, kicking and screaming you struggle to get away but there are too many of them, they overpower you and stuff you into a trunk of a car. Bruised and dazed, you don't know where you are. What's going to happen to you? Will you live through this? This is the day you get the diagnosis. "YOUR CHILD HAS AUTISM"!

There you are in Beirut, dropped in the middle of a war. You don't know the language and you don't know what is going on. Bombs are dropping "Life long diagnosis" and "Neurologically impaired". Bullets whiz by "refrigerator mother" " A good smack is all HE needs to straighten up". Your adrenaline races as the clock ticks away your child's chances for "recovery". You sure as heck didn't sign up for this and want out NOW! God has over estimated your abilities.

Unfortunately, there is no one to send your resignation to. You've done everything right in your life, well you tried, well, you weren't caught too often. Hey! you've never even heard of autism before. You look around and everything looks the same, but different. Your family is the same, your child is the same, but now he has a label and you have a case worker assigned to your family. She'll call you soon. You feel like a lab rat dropped into a maze.

Just as you start to get the first one figured out ( early intervention) they drop you into a larger more complex one (school). Never to be out done, there is always the medical intervention maze. That one is almost never completed.

There is always some new "miracle" drug out there. It helps some kids, will it help yours? You will find some if the greatest folks in the world are doing the same maze you are, maybe on another level but a special-ed maze just the same. Tapping into those folks is a great life line to help you get through the day. This really sucks but hey, there are still good times to be had. WARNING! You do develop and odd sense of humor. Every so often you get hit by a bullet or bomb not enough to kill you, only enough to leave a gaping wound. Your child regresses for no apparent reason, and it feels like a kick in the stomach. Some bully makes fun of your kid and your heart aches. You're excluded from activities and functions because of your child and you cry. Your other children are embarrassed to be around your disabled child and you sigh. You're insurance company refuses to provide therapies for "chronic, life long conditions" and your blood pressure goes up. Your arm aches from holding onto the phone with yet another bureaucrat or doctor or therapist who holds the power to improve or destroy the quality of your child's life with the stroke of a pen. You're exhausted because your child doesn't sleep.

And yet, hope springs eternal.

Yes there is hope. There ARE new medications. There IS research going on. There are interventions that help. Thank God for all those who fought so hard before you came along. Your child will make progress. When he speaks for the first time, maybe not until he is 8 yrs old, your heart will soar. You will know that you have experienced a miracle and you will rejoice. The smallest improvement will look like a huge leap to you. You will marvel at typical development and realize how amazing it is. You will know sorrow like few others and yet you will know joy above joy. You will meet dirty faced angels on playgrounds who are kind to your child without being told to be. There will be a few nurses and doctors who treat your child with respect and who will show you concern and love like few others. Knowing eyes will meet yours in restaurants and malls, they'll understand, they are living through similar times. For those people you will be forever grateful. Don't get me wrong. This is war and its awful. There are no discharges and when you are gone someone else will have to fight in your place.

But, there are lulls in wars, times when the bullets aren't flying and bombs aren't dropping. Flowers are seen and picked. Life long friendships are forged. You share and odd kinship with people from all walks of life. Good times are had, and because we know how bad the bad times are, the good times are even better. Life is good but your life in never normal again, but hey, what fun is normal.

WELCOME TO HOLLAND
by
Emily Perl Kingsley.

c1987 by Emily Perl Kingsley. All rights reserved

I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......

When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."

"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."

But there's been a change in the flight plan. They've landed in Holland and there you must stay.

The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.

So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."

And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.

But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.

You see for me the Holland thing is still too romanticised....

Yes the Beiruit one is more realsitic definitely from my experience!

Oh I see, thank you - now I understand. You always talk a lot of sense, stillenacht.

Conversely, I used to struggle a lot with people trying to find "the bright side" of losing a child - "I expect it's made you a better mother/taught you what matters in life/to appreciate what you have" blah blah blah. Well OK I still struggle with it - I mean honestly, like anyone needs or wants to lose a child to be taught that particular lesson?! But now I just do the whole "yep", smile, nod, and move on .... I know people are rooting around thinking "what the hell can I say to this woman?"

yes thats it vgl and thanks for saying i talk sense too -has put a big smile on my face

i may not have made such a comment to someone with a SN child, but i have probably thought it in the past...however reading this thread has reminded me that this is very similar to the comments I have had ever since my parents died when I was in my early 20's - anyone who heard about it, or who hears about it since - says I dont know how you cope, how did you get through it

well I did because I had to. there was no choice, i couldnt ask my parents not to die. I hate it when people make these comments, or just seem embarrassed when they find out im different to them (because im still at an age when lots of people have at least one grandparent, let alone both parents).

i am sure people are trying to be kind, in the same way as i would be if i made this comment in another context, but it has made me think.

stillnacht thank you, no I dont mind. Yes she is beautiful isnt she.

verygreenlawn really!? Did someone say that to you? I have heard a few corkers but never that one. I know exactly what you mean about the nodding thing. I occassionaly feel resentful that I am the one who has to be understanding and tolerant when people say deeply upsetting things to me. Most of the time it goes over my head and I try to understand the motivation.

hatesponge - my best friend lost her mother when we were in our mid teens - of course i had no idea what she was going through and my first real experience of grief was when DS2 fell into autism (I had lost grandparents etc but this was my first real stomach churning grief experience)..although our grief is different for different reasons we are a lot closer now as we have a shared understanding of life challenges/ heartache... (I don't know if i have put that right) I remember asking her when am i going to see the world in any other colour other than grey even though it was a gorgeous summers day....

chegirl - she certainly is beautiful.

yanbu 2shoes I know this is slightly different but I imagine what you are feeling is somewhat the same

My first little boy was stillborn and I did and still do get comments such as you are sooo strong, I couldnt cope with the loss. You are so brave

I want to scream, I am not strong or brave and you just have to cope when it happens to you

That said I know most people say these things for the best of reasons ..

I have been lucky and not had the "I don't know how you cope remarks", mainly because my kids tend to save their more extreme behaviours for home I think...BUT I personally have a horror of the "sad" face that some professionals make when they are discussing DS2 with me, I think they think that my cheery matter of fact approach means I am in denial or something. I like professionals to be straight forward and honest and use clear non- euphemistic language!

I actually find the Italy/Hollanfd thing makes sense to me, perhaps because my older DS's are likely to be diagnosed as mild AS rather than classic regressive autism and we do have a lot of good times in between the tough. i can see how the Beirut analogy is better for more severely affected families.

I however am not good at knowing what to say when people suffer bereavment or have very bad news because I don't like to make the kind of comments mentioned above but am scared of them slipping out due to nerves.

chegirl, yes have had those comments a few times - though my all time favourite was the lady over the road who said she knew how I felt because she'd just lost one of her cats and it was like a child to her