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

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

an easy disability to care for?

BumBiscuits Wed 05-Dec-12 20:31:45

Yes, depending on the increase in the number of cases of DS pregnancies.

baublesandbaileys Wed 05-Dec-12 12:50:37

bumbiscuits, I would interpret that as
if the number of older/higher risk mums become pregnant, then there are more DS pregnancies being identified, if the amt of births are static then that means that MORE and a higher percentage are being terminated

say the static number of births is 10
in the past there were 20 identified, so the termination rate would be 50% right?
but if the amt being born stays at 10 when the number of DS pregnancies itendified go up to say 40, the termination rate is now 75% right?

does that make sense?

BumBiscuits Tue 04-Dec-12 09:40:54

*steady

BumBiscuits Tue 04-Dec-12 09:40:29

I was under the impression that despite testing in pregnancy for DS the rates of DS births have remained stead.

The reasons given were that more older at risk women are becoming pregnant, so there are more cases than before and women are choosing not to terminate because it may be their last chance at having their own baby and care/help is perceived too be much better than in the past.

threesocksfullofchocs Tue 04-Dec-12 09:02:53

devilishmangerdanger do hope you are feeling better today.
you know where I am if you need to chat.

DawnOfTheDee Mon 03-Dec-12 19:28:01

I'd have to say pre-MN, I did probably think it was an 'easier' disability. It wasn't anything I'd consciously thought about in any great depth but I think seeing programmes on telly where people with DS lived independently (or at least semi-independently), had relationships, had jobs, went to mainstream schools meant that I thought it wasn't as bad as some other disabilities.

Must say though I always thought the 'lovely, friendly, cuddly' stereotype was very patronising.

Before coming on MN I had no idea that heart defects, hearing/eyesight problems, etc were common in DS. I do now thought and realise how wrong I was.

lljkk Mon 03-Dec-12 19:00:06

I know someone exactly like that, too, Spoons. She was utterly devastated about termination but felt it was the kindest option and her duty.

My cousin has an adult son with DS and no, it doesn't look easy. Anything but. Although she always points out how much easier her son is to care for than many people with significant SN conditions. Entirely true.

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.

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"

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.

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.

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.

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.

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.

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.

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.

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.

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.

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!

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 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!

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.

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?

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

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.

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