Active discussions

Meet the Other Phone. Flexible and made to last.

Meet the Other Phone.
Flexible and made to last.

Buy now

Please or to access all these features

Talk
AIBU?

Share your dilemmas and get honest opinions from other Mumsnetters.

Original poster

To think that maybe people should be a little more thoughtful before posting hurtful comments about children with special needs/disabilities.

183 replies

wrinklytum · 18/05/2008 21:09

Grr.

Had a bad day and maybe a little oversensitive.

First and foremost,they are children.

And they are loved.

OP posts:
PosieParker · 19/05/2008 16:00

Yurt1, How is anyone offered such a choice? Geekgirl, OMG? I am in dismay, adoption surely if anything but by that point surely a mother is so attached to the baby that she could not possibly make that choice.
Although I understand some do, 5 week before a child is born you have to accept that that child will be born, surely.

PosieParker · 19/05/2008 16:02

Peachy, my choice would not be based on confidence in my 'parenting' it would be the impact on my wider life and family that I would consider. It would be a whole list of reasons that look both cold and calculating if I write them down and pretty selfish too, but they are reason enough for me and the disability/SN would have to be of a certain degree.

2shoes · 19/05/2008 16:07

how strange that people think that test will show it all.
not all disibilitys can be tested for.
my dd's happened at birth. all the testing in the world wouldn't have shown that she had cp as it hadn't yet happened.
my freinds ds has brain damage. no point testing as it happened whne he was a tot and fell in a pond.
(i know I am of topic but have wanted to say that all day)

Kewcumber · 19/05/2008 16:07

my friend recently adopted her second baby with downs syndrome. There are alternatives to termination if you can't cope.

PeachyHas4BoysAndLovesIt · 19/05/2008 16:08

Yes Posie, but you are only one person, and even then if you dont have a child with sn (dont know if you have are you sure you know what the impact would be?

speaking as someone with 2 sn kids, 1 NT one and a newborn baby with a bigh risk of developing the same Sn condition.

Although I am not pro abortion for disability I dont feel its my place to choose for other opeople but I do feel strongly that there is a lot that can be done to enable people to want to choose differently, yswim?

PosieParker · 19/05/2008 16:17

I am not proud of this choice and haven't had to make it and so do not know really if I would, with three LOs playing together I guess the choice would be much more difficult.
I agree with Kew there are alternatives that could reduce the termination after 22 week rule, if need be.

pagwatch · 19/05/2008 16:47

there is also the problem that a very high percentage of people who are asked if they would be able to cope with the needs of a child with a severe disability would be likely to say "i couldn't do that".
I regularly get " i couldn't possibly do what you do" from strangers (which I actually translate as "thank fuck its you not me" ).
The truth is I would have happily told you 10 years ago that i could not possibly be the parent of a child with SN. And now i am.
And I am not some wandering mother earth type. i am rubbish at many things. And I am selfish and inclined to idleness.
But my Charlie has been the making of me. He has taught me more than the previous 30 years had taught me. i am a better person and a better mother and I value life and laughter.
many many people who encounter my son are affected by him and he just lightens people day.
So whilst he would still be here ( his disability happened at 18 months) I worry that in seeking a perfect child, in restricting our views on what constitutes a positive and meaningful life we are loosing some of our most valuable citizens.
My boys siblings are better people because of their brother. He is an equal and valued member of my family. i am very grateful that I was given this oppertunity and I feel quite sorry for those who will only see the difficulties.

I also know that there are those who read our writings about our fab kids and think we are making the best of a bad situation and want to talk about our courage. Now they are the ones I really feel sorry for as they will truly never get it. That craving, needing to be normal, that fear of being different is the most cowardly of lives. The people who get on best with Charlie are always those who are filled with confidence - those who shrink from him are really quite sad. My DS1 always judges people by how they react to his brother. It is an interesting test. He calls it the Alan Partridge test . He is a very beautiful boy and full of quiet affection. You have to be pretty uptight indeed to be uncomfortable around him. I think that is pertinent here. That discomfort with anything outside ordinary

2shoes · 19/05/2008 17:00

Lovely post pagwatch

cazcaz · 19/05/2008 17:02

Thats exactly how I feel Pagwatch!!
Thank you for putting it so beautifully!.

My DS wasn't diagnosed untill just before Christmas aged 4.3 (although he has always had difficulties)with di-george syndrome. Of course he will have more obstacles to overcome in his life and this will impact on all of the family, but in no way is this any kind of 'half life' he is just simply 'him'! My beautiful boy!

I was so at some of the comments on the abortion thread, and I am pro choice but found those comments horrifying and extremely offensive.

PosieParker · 19/05/2008 17:12

Question for those with children with SN.
My children and I sometimes see a severely disabled person or someone with SN, and my children ask what's wrong with them. Sometimes we are within hearing distance and so i hope my answer is okay.
I say that sometimes from birth or through illness or accident these boys/girls find that they can't do everything that we can do. They often ask, if a child/adult is making alot of noise shouting or screaming in a noisey way not painful way, are they in pain? And I reply that I don't think so because doctors have medicine to stop it.

2shoes · 19/05/2008 17:16

depends on the age of the child

PeachyWontLieToYou · 19/05/2008 18:31

like 2shoes says

but a lot of disorders come with noises- no some cp kids make noises as do some asd ones.

pagwatch · 19/05/2008 18:35

My 5 year old DD is apparently an expert on her brother and tells people that his brain just works a bit differently.
Actually that is equally as informative as most of the consultations we have ever had about DS2.
Just give information age appropriate for your audience.
I mostly don't mind what people say as long as they don't whisper and mouth things at each other .

pagwatch · 19/05/2008 18:36

oh peachy go on - tell me lies, tell me sweet little lies

PeachyWontLieToYou · 19/05/2008 18:42

pmsl

tis my homage to iving near Barry Island dontcha know?

KerryMum · 19/05/2008 18:46

This reply has been deleted

Message withdrawn at poster's request.

PeachyWontLieToYou · 19/05/2008 18:47

i cant answer that as i nursed so had experience work experience wise for years

i dont think i could abort, but cant know

PosieParker · 19/05/2008 18:55

Good I'm always quite loud and have never believed in 'shhh' in response to those sort of questions or 'don't look'. I do encourage my children to smile and try to make eye contact with parents/carers to acknowledge that they probably know we're tlaking about them, and my smile is NEVER one of pity.

2shoes · 19/05/2008 18:57

PosieParker dd is in a wheelchair so for young children. just that her legs don't work. or for the rest something like her brain is wired differently.
if they are older I would tell the truth but not infront of said person iynwim.
when ds was little i explained dh's epilepsy as thunderstorms in his head. it worked and ds got it.

NotABanana · 19/05/2008 19:01

Kerry

I am sorry for your situation. We were told our baby might have a problem and selfishly or not we decided to carry on with the pregnancy. Everyone (hopefully) does what is best for them.

kayzisexpecting · 19/05/2008 19:04

What about children who are born 'normal' who go on to develop disabilities?(sp)

My DH has Becker Muscular Dystrophy. luckily Becker's is the mild version. He wasn't diagonosed until he was 9. My MIL has said to me a few times "I gave birth to a normal baby but look what happened"(which makes me feel sick sometimes)
Luckily the chances of DS having are 1 in a billion because it is passed down by the mum and I don't carry it. If we have a girl and she has boys they will probably get Muscular Dystrophy.

Boys that are born with Duchenne's Muscular Dystrophy are 'normal' until they are older sometimes about 5 sometimes older. Someone my DH knows through Muscular Dystrophy can't walk, can hardly talk and he just can hardly move at all anymore and his parents said that until he was 7 he was just like a normal little boy.

What do you do in these circimstances?(sp)

Squirdle · 19/05/2008 19:24

Kerry, I don't think you had any choice in that situation. You baby would not have survived anyway. My BF's sister had the same awful experience a couple of years ago when she was told her baby had no kidneys and they chose termination (god how I hate that word when it's used in this situation) Some people choose to carry on with the pregnancy knowing thier baby will not live when it is born and some simply cannot do that. It's a different situation altogether.

We were basically told the same, that our baby would have numerous problems and wasn't expected to live. Now as I said before I was only 19. Very young. If that was me now in the same situation, I know I would feel very differently and would demand all of the information and tests neccessary.

I was also dangerously ill, so that played a massive part in all the decision making too.

Squirdle · 19/05/2008 19:28

And I agree that I would never hush my children if they were to ask about someones disability. I explain in the best way I can. I don't want my children to be ignorant, I want them to understand that there are many different people in this world and they are the same as you or I iyswim.

kayzisexpecting · 19/05/2008 19:36

I can't remember for the life of me where we were now(not that it matters I suppose)

But DS(14 months) was pulling faces, pointing(his favourite thing ATM) and laughing at a young boy with Downs who was doing the same back. It was so cute and the boys parents were lovely as was the boy.

I am going to teach DS and any other kids we have that everybody is different and they are not to be made fun off.

2shoes · 19/05/2008 19:43

sounds like your ds was laughing with the boy with ds not at. how cute.
(give him a hug from me)