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

(82 Posts)
devilishmangerdanger Sun 02-Dec-12 18:57:08

an easy disability to care for?

fosterdream Mon 03-Dec-12 11:20:14

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.

threesocksfullofchocs Mon 03-Dec-12 11:21:34

yabu for asking such a silly question and not explaining why

surelythisoneisnttaken Mon 03-Dec-12 11:32:23

she did explain why...

MariaMandarin Mon 03-Dec-12 11:42:58

I agree that the up beat media image of Downs does give the impression that it is not a severe disability, when in many cases it is severe. I also think that this representation can lead to the parents of children who are more severely affected being suspected of not trying hard enough, with speech therapy for example, to develop their children's abilities.

ReindeerBollocks Mon 03-Dec-12 11:51:20

I experience this but in a different way. I have a child with Cystic Fibrosis. Due to medical advances people with CF generally live until their late 30/40's. The CF trust has been quick to put this about and many people have told me that it's one of the better conditions to have due to improvements. hmm

But again, like you, it's on a sliding scale. I know an 11 year old who passed away from it recently, due to the severity of her condition. My child is also quite badly affected and it really winds me up when people comment on how it will be fine for my child as they will live well into adulthood. They don't know how severe our child's CF is or how badly the lungs are damaged. My child has had quite a difficult and complicated time medically.

I hope my child lives for a long time yet, but I'm also acutely aware that my child is much further down the road than others. I'd prefer strangers to say nothing, than repeat crap stats and myths.

Likewise, I assume most things like DS and other such conditions have a sliding scale. I also think that the media has perpetrated such myths about DS due to anyone with DS in programmes being quite placid and gentle. Which fuels the stereotype that it isn't a difficult condition to suffer with, and that it is mild LD and a gentle loving nature. Im sure that people with DS have their own personalities and can be loving, happy, moody or sad, just as much as everyone else. It would be ridiculous to think otherwise.

I'm sorry that you are struggling too, do you have a community nurse that you are in regular contact with? Is it possible that she could provide you with the details of support networks and other parents experiencing the same type of difficulties as yourself. ((hugs)) for you.

RooneyMara Mon 03-Dec-12 11:52:39

I've never really thought it would be easy. I've only heard sort of second hand glimpses of life with a child who has it, from friends who know people it affects directly, and no, it never sounded that easy. Though I knew one mother whose baby was born with it despite test being 'normal', and she never recovered. I never see her now as she withdrew, I think me being quite a 'new' friend at the time and having a 'normal' baby was too too hard for her.

Unless of course I did or said something spectacularly insensitive, I always worry just in case I did.

I think I'm more open to having a child with Downs than a child with maybe a different trisomy, though, partly because it is so common and especially at my age and older - so it's kind of imperative to accept that I may have a child with it because otherwise it would be like being in denial.

I saw a mother with a teenaged child in the bank one day, and the child was behaving in a really difficult way, but as he was the same height as her and pretty strong, it was clearly not that easy just to 'remove' him or something. I felt terribly upset for her.

threesocksfullofchocs Mon 03-Dec-12 11:53:42

sorry I missed the explanation. I do know how you feel op, dd has cp and although it is severe(wheelchair, can't talk and so on) I am still thought "lucky" as it is visible............
oh and she can't run away.

devilishmangerdanger Mon 03-Dec-12 12:13:23

no bother 3 socks, your not the only one who didn't realise my intentions.

My son. my family have been tied up in conflict for years. He lacks accountability and costs too much, hence why nothing is getting done. He is a lovely lad who has major issues, is quite aggressive and unpredictable.

I have done the whole support groups etc, all I get is, we can't help, haven't seen that before. I do wish I could come across the key person who can turn things around for us. However until then, we will plod on, living our limited, isolated life.

I just felt people thought down syndrome was an easier disability to live with when in some cases it's not. I asked to get a guide on my opinions/feelings.

MrsDeVere Mon 03-Dec-12 12:32:04

I know of at least one LA SS turning children with ds away because they don't meet the threshold for assessment.

Because they are just like every other child apparently hmm

forevergreek Mon 03-Dec-12 12:38:03

Develish- have you been to 21 and co? Based in teddington, they are great.

Also I can't remember the name, but a wonderful women in Kent does a week riding school a couple of weeks a year which is a speech therapy week. They ride/ meet friends/ do yoga/ run through countryside/ cook etc and it's 9-4 everyday for a week. They match carers according to needs, so if they have 1-1 at school/ home etc, they will have 1-1 there. Would you like me to find the name?

BartletForTeamGB Mon 03-Dec-12 13:38:11

"Because they are just like every other child apparently"

There is an element to which this is true but it clearly isn't the whole story and it shouldn't be an excuse for a blanket refusal of SS assessment.

Some children with DS have very minor learning difficulties, some have very major learning difficulties and physical problems. Some children WITHOUT DS have very minor learning difficulties, some have very major learning difficulties and physical problems.

Everything (DS, cerebral palsy, ASD/autism etc) is on a spectrum, so lumping every child with DS together is likely to be as unhelpful as lumping every child with ASD together. Each and every child, whether they have diagnoses or not, will have their own challenges and some will have some more severe than others.

As it is, I find it hard to see that people think that DS is an 'easy' diagnosis. 90% of babies who have antenatal diagnoses of DS are terminated, presumably because people are worried about the effects that DS will cause for them and the child.

baublesandbaileys Mon 03-Dec-12 13:40:41

OP one of my pet hates is when people say that all people with DS are "so affectionate and loving" and worse "cute"

yes they can be all of those things! but they're people with a whole range of personalities and emotions and behaviours and some can be very challenging and not at all cute!

plus DS comes with higher risk of all kinds of other illnesses which need to be managed!

BumBiscuits Mon 03-Dec-12 13:55:22

I would imagine that most people wouldn't presume to know what it is like having/living with DS, if they have no first hand experience.

It is the ignorant minority who get noticed unfortunately.

baublesandbaileys Mon 03-Dec-12 14:00:34

I don't know, you hear the "they're so loving/cute" thing a lot.
I think people like to think of people with DS as just big cuddly adult sized toddlers, which is incredibly patronising! and also unfair on the parents who have to care for them because I'm sure its really not that fluffy and fun and all about getting kisses and cuddles!

FloraPost Mon 03-Dec-12 14:16:28

Devilish, did you know DownsEd recently moved to Lancaster? They don't run direct services anymore but they do offer assessment, consultation and advice through schools. Might be worth getting in touch (if you haven't already) to see if they can help through your son's school or by signposting to services where you live.

I'm in London so flagging the services we use won't be much good to you.

My son has Down's Syndrome and has just been refused Statutory Assessment in our authority for this very reason! I know the procedure to follow but have decided to wait until he is ready for Reception intake, by which time we will have crucial evidence that his needs do differ from NT children.

Inclusion can be problematical, we don't want our children to be merely accommodated by the mainstream system, we want meaningful learning to take place! A school place with no support is of little use. I know how much effort is required to keep him on task!

I have found being his mother has tested me far more than having my other two NT children. Of course all children come with situations and problems to solve but with my son I have had to become an advocate to ensure he receives the services he is entitled to!

Everyone in our families adore him but I do have some fears about what adult life may hold for him.

His best gift to me has been to make me very mindful of the present and not rush ahead in my imagination! I remain very hopeful for him but it is natural to feel the responsibility a little more.

Peachy Mon 03-Dec-12 14:51:37

' I am still thought "lucky" as it is visible............
oh and she can't run away.' Sorry three but I did have to giggle a little, you will remember why though wink

I don;t think anyone who has a child who has any extra form of difficulty placed upon them- from the level of dyslexia whatever upwards- is lucky: how can they be? Nobody would say Dear Father Christmas, I am pregnant, please ensure my child needs extra help just to get by.

nobody sane anyway.

I've known people with DS who fit the stereotype- and people with DS who are so far from it that it's unreal. Sam as with ASD (heck I have one of each type myself! sweet and innocent V difficult and confrontational). I am sure the stereotype still persists though.

Frontpaw Mon 03-Dec-12 14:56:10

Isn't someone on The Archers expecting a baby girl with DS? I'm expecting that this storyline will be quite 'educational' as they do tend to be quite good with 'ishoos' on there.

Cozy9 Mon 03-Dec-12 14:57:49

I was in the swimming pool years ago when a man with downs jumped in on someone and broke their neck. It was very upsetting for all involved.

I was shocked that over 90% of pregnancies with a baby with downs were terminated according to an article the other daysad

So I'm not sure people do view it as easy.

TrillsCarolsOutOfTune Mon 03-Dec-12 15:10:53

I don't think it's 90% of pregnancies. I think it's 90% of pregnancies where the mother chooses to have the test. That's already a biased sample.

MrsDeVere Mon 03-Dec-12 15:16:20

bartlet it was a quick post because I was on my way out.
I am aware of all you say.
But when I parent rings up for an assessment to access services (no assessment = no services) it is NOT ok for the person on the end of that phone to make that decision.

Based on the sterotypical idea of a loving, chubby little baby.

The baby may well be loving and chubby but is also likely to have low muscle tone, difficulties in feeding, hearing problems, heart problems and may even have ASD, CP, or a raft of other issues.

Having DS does not preclude a child from having a host of other difficulties. Its not like some sort of protection from ill health and other disabilities.

MrsDeVere Mon 03-Dec-12 15:18:28

That rant was directed at the LA in question BTW, not you.

Mind you I cant get an assessment for my son either and he has ASD, LDs and APD.

spoonsspoonsspoons Mon 03-Dec-12 15:21:49

A friend terminated because of the baby having down syndrome, at least that was the recorded reason. What wasn't recorded was the baby also had severe heart defects that weren't compatible with life. She struggles when people make blanket statements along the lines of "i wouldn't terminate just because of downs syndrome"

blueemerald Mon 03-Dec-12 15:46:30

ReallyTired That was my point, I believe it's her personality/the way she was raised (my grandmother and father are exactly the same!) My aunt couldn't be further from the "cute and giggly" Down's Syndrome stereotype.

Join the discussion

Join the discussion

Registering is free, easy, and means you can join in the discussion, get discounts, win prizes and lots more.

Register now