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AIBU?

Share your dilemmas and get honest opinions from other Mumsnetters.

Original poster

AIBU to think people see down syndrome as.................

81 replies

devilishmangerdanger · 02/12/2012 18:57

an easy disability to care for?

OP posts:
SoleSource · 02/12/2012 19:36

I wouldn't bthnk parenting is easy. Compared to most children my disabled child is dead easy to look after. The isolation and restrictive choices is hard to live with, if you're a free spirit as I am.

Coconutty · 02/12/2012 19:39

This reply has been deleted

Message withdrawn at poster's request.

McChristmasPants2012 · 02/12/2012 19:39

As with all disabilities I would imagine there is difficulties.

I don't know what it's like to have a child with Down syndrome so I wouldn't judge or make uneducated comments about how easy or hard the Carer has it.

LittleMilla · 02/12/2012 19:40

First the first time in my life I will say YABU. My dsil has DS and is now an adult.

Whilst she's generally mild mannered and happy, you cannot understand the strain of caring for someone their whole life with little provision for so many.

My dmil faces the likely prospect of spending every day for the remainder of dsil's together. She's very loved and good company, but once 'mainstream' education and everything else is exhausted then it's quite a depressing prospect. DS people don't grow up and move away in the same way as other children. And often because their disability is viewed as 'mild', they fall between mainstream and disabled iyswim.

Bloody hard work. But like others have said, she is the sunshine and heart of their family and loved enormously.

missymoomoomee · 02/12/2012 19:40

YABU I don't know anyone who would think that at all. What makes you think that's the perception people have?

SauvignonBlanche · 02/12/2012 19:41

Only ignorant people would think all children with DS are the same.

Wheredidmyyouthgo · 02/12/2012 19:41

No OP, I think it would be incredibly challenging, from what little I know about it.

Original poster
devilishmangerdanger · 02/12/2012 19:43

thanks everyone

yes I am the parent of a child who happens to have down syndrome..........he is at the very severe end physically, medically and neurologically.

Many issues that have not been able to be supported etc and life for him, for us, is very isolating and challenging.

Suppose I'm just a bit fed up atm, maybe wishing life was a bit easier, then publicity and how positive it is doesn't help.

OP posts:
LynetteScavo · 02/12/2012 19:43

I don't see any disability as an easy disability to care for.

I did once start a thread asking why parents choose to terminate when they discover their baby has down syndrome, and was provided with some very informative answers.

What I do know is that all children are different. Some are easy to care for, others aren't. Some will require long term care, which will be difficult to find, while others will be able to live adult lives with minimum support.

I conclude, having read a number of support threads for parents who have chosen to terminate a much wanted pregnancy due to their baby having down syndrome that people certainly do not think it's an easy disability.

Alisvolatpropiis · 02/12/2012 19:53

I'm sorry you've not been supported properly OP Sad

As I said in my first comment,I don't know anybody who thinks it would be easy. Myself and everyone I know think it must be hard,not impossible but hard.

It must be very frustrating to be told how easy and positive things must be when you are actually living it every day,no matter how much you love your child.

Original poster
devilishmangerdanger · 02/12/2012 19:54

it's ok Ali, the profs are all at a loss how to help him with most of the issues he has

OP posts:
Lia87 · 02/12/2012 20:03

I don't think anyone would assume that, especially as the child gets older its going to be much harder, emotionally as well in some cases i'd think. But also i wouldn't view it as a bad thing necessarily. I don't know if i'd cope well but i'm sure to some mums it could be a very positive experience caring for someone to a greater extent

BegoniaBampot · 02/12/2012 20:12

no I don't think it's easy and I know that children with DS can vary a lot in ability etc. also that there can be serious health implications. I think the media the last few years have put out a very positive side in showing those who are high functioning and fairly independent, going to college and some have broken through to mainstream acting etc. Haven't seen as much focussing on the more challenging aspects and how difficult it can be with the added worry of their care as they get older and parents are no longer around or as fit.

forevergreek · 02/12/2012 20:41

op, if you are in london/surrey/south east area i know of a few places that many be of help to you. please private message me if you would like some info and resources

LynetteScavo · 02/12/2012 20:50

devilishmangerdanger, I think no matter how challenging your child is, if you feel supported it makes a world of difference.

I really hope you fine the support you need. x

FloraPost · 02/12/2012 20:51

Interesting question.

I'm very sorry to hear you & your son aren't getting the support you need, OP. Services vary hugely according to where you live. We have a really excellent SALT who specialises in DS, PM me if you would like her details.

My son also has DS but has been fortunate (so far) with medical issues. He hasn't got off scot-free by any means but we know kids with DS who have much worse health problems to contend with so we count ourselves lucky.

As a pp said, the variation is huge, as with any group of kids. My personal experience is that I have a much easier time than many parents at the childrens centre whose DC don't have a diagnosis or have severe behavioural problems or life limiting conditions, etc. Loads of parents of NT kids we know think we have it hard. I don't agree.

Mumsyblouse · 02/12/2012 20:57

I agree with BegoniaBampot that although it has been wonderful to see more children with Down's Syndrome in the mainstream media, such as the little boy in the M & S ad, and quite a few articles in the papers such as about children going to mainstream schools and so on, I can understand how this makes you feel like your needs and your child's needs are not recognised. They do tend to show the cute mild needs children, and whilst of course some children are like that, and adorable, there are also children or adults whose needs are entirely on a different scale, pre-verbal, violent (not intentionally, but that's not the point), dependent their entire lives. It's so difficult, I'm sorry your situation is so difficult.

I think the reason is that campaigning groups (e.g. Downs syndrome charities) often want to break down stereotypes of disabled people as not capable, so they show positive stories of everyday life and mainstream education and so on which are the truth of life for some but absolutely not for others. I have found the literature from some charities to be very upbeat with only cursory mentions of some of the difficulties (e.g. high rates of Alzheimers when older).

FloraPost · 02/12/2012 21:07

I think the heavy promotion of positive images has been to counterbalance the high termination rate when DS is diagnosed antenatally.

ReallyTired · 02/12/2012 21:19

I think that people with Downs are all individuals. The three people I have met with downs (all girls) have been completely different to each other.

My understanding is that children with Downs often have substantial medical problems like heart defects, issues with eyesight, hearing and intellectual disablity. There is no way that its easy to parent a child with Downs.

I think the Downs charities want to show that life is still worth living for a person with Downs. Most people faced with Downs choose to terminate. I imagine that most parents are terrified at the prospect of any special need.

Pictureperfect · 02/12/2012 22:43

I don't think a lot of people know about the risks of heart conditions, leukaemia, breathing problems and the various things children with Down's syndrome can have and just see the learning disability side of it

blueemerald · 02/12/2012 23:05

I totally agree about the widely accepted romanticised view of Down's Sydrome (not helped, I feel, by the inclusion of smiley, laughing children with DS in tv adverts, I don't think the inclusion is bad but just myth perpetuation is one down side). My aunt (50ish) has DS and is "high functioning" (is that the correct terminology for DS as for Autism?), she can read and talk etc. She is also the most whingey, moany, miserable person I've ever met!

Original poster
devilishmangerdanger · 03/12/2012 08:56

Unfortunately I'm not down south.

I'm 11 year, nearly 12 year down the road and don't know how we have managed so far.

I just wish and hope people would see the down side of down syndrome instead of the ups of downs.

Just seems to make it harder for those who do have the raw deal.

I feel a prisoner in my sons disability, but that could be possibly the lack of support just as much as his issues. I went on the special needs board to find an article comparing DS and autism. How easy DS has it and as I usually get overlooked on there, I come here to see if what I was thinking was right and obviously by the posts.......I am wrong.

Thankyou x

OP posts:
ReallyTired · 03/12/2012 09:22

"My aunt (50ish) has DS and is "high functioning" (is that the correct terminology for DS as for Autism?), she can read and talk etc. She is also the most whingey, moany, miserable person I've ever met! "

Is that Downs, your your aunts personality? Plenty of people who are neurotypical are "whingey, moany, miserable". However some people with Downs do have autistic traits. Two of the girls I met with Downs were specularly stubborn.

I didn't know that people with Downs were more at risk of leukaemia.

MrsReiver · 03/12/2012 09:23

*devilish" YAsooooooooNBU.

I have a brother with down's syndrome and have experienced all the usual sterotypes - "he must be so loving" "oh he will be a joy to have around, they're always so happy" and "he'll love music then?"

For the most part yes, he is lovely, he's one of the nicest most genuine people I've ever met. But he can also be an obnoxious, extremely challenging bugger!

Life with DB was incredibly challenging until he was about 16. Then things seemed to settle down, he moved on to a college teaching him basic life skills (DB's learning and behavioural difficulties are complex and on the mod-severe end of the spectrum) and started exploring his new interests - like cooking, and a local drama group. Finding he enjoys these things has given him hobbies outside the home, and a group of friends with similar interests. He's 21 now and has a better social life than I did at that age.

I remember when DB was about 12, it seemed like there was no light at the end of the tunnel but we're out the other side now and it can get better. Of course DM and DF still have bad days with him full of temper tantrums and massive strops, but they're getting fewer and further between.

Incidentally, DS and Autism aren't mutually exclusive, DB is on the spectrum. It can be difficult to get a diagnosis as there are many features of downs which are also autistic behaviours (hand flapping, body rocking for example) but it's worth looking into.

fosterdream · 03/12/2012 11:20

My cousin had downs and like little he was the heart of the family. My aunt and uncle had a lot of help from ss to get him into special clubs at the local college and swimming centre. Have you asked for help rest bite, family and friends? I know our local ss offer rest bite from trained caring foster carers as this is something I will be doing when my DD's are older.