New test for antenatal testing for Down Syndrome

[eidsvold]

Just came across this - developed at the hospital where dd1 was born 5 years ago. IN fact today 5 years ago was when we finally got to bring her home.

not sure how I feel

actually do know

[gess]

Part of the reason I'm beginning to think they should be spit is because I've spent the last however many weeks reading the literature regarding autism and it's completely beased on HFA (there is a policy to investigate HFA, and oput research resources in at that end as you supposedly find out more), the results are then assumed to relate in a linear way to LFA. And I think that's utter bollocks! Partly becaue they're just assumed to be 'worse' when that's not actually always the case. I think the problems underlying the condition are very different as well (in the case of non verbal individuals I think its often related to problems with movement rather than severity of theory of mind deficit for example). So yes I quite agree you can have higer functioning individuals who are as disabled by their condition as lower functioning.

I don't really buy the idea that services would get worse if the groups were split. Locally there doesn't seem to be much relation between position on the spectrum and access to services, I would have thought that funding would allow more appropriate activities to be aimed at specific groups. Perhaps a chance to develop group SALT for HF individuals for example and social groups. There is also an opinion locally (I've heard it voiced) that if you have a'walker and talker' (their expression, I loathe it) then you can't access services, whereas if you have a non conversational child then you can. As the parent of a child with LFA it;s simply not true. The people I know with the highest level of dp's have HFA children, the out of school activites for autism are all for children with AS. Non verbal kids can't access things like SALT. Services are diabolical with huge gaps all round, and I wonder whether some sort of split would allow both groups to benefit. I recently went to a talk by the LEA where they talked about dx etc, and didn't even mention the route that children with autism that would be picked up in pre-school would take, they only talked about CAHMS. When asked - the person giving the talk didn't even know.

It's not about 'severity' - I quite agree with Davros that speech has little to do with the severity of the condition, one of the most disabled children I know has very good speech, but I do think the needs are different, and that different approaches and services are required, and that when setting them up the needs of only one group seems to be considered.

I can slo see the advantages of remaining as a whole. But perp[ahs with more recognition of the individual differences, and individual difficulties.

[Peachy]

The onl;y provision amde here is by the NAS, that's it. All the groups etc are co-ordinated by a local NAS funded community worker. that's why i would fear for services here, iyswim. There are no after schools evices I am aware of for ANY disabled children.

I agree about indivisual differences needing mroe focus, but it hink one umbrella organisation can co-ordinate and campaign far mroe efectively than 2 smaller split down groupings, its certainly a premise that amcmillan workewd upon when i was workingf ro them, which si why they were merging with groups such as Sargent- power in numbers.

[Peachy]

Actually was just thinking about the research you did- interested as I just completeed an assignment for Uni about provision for ASD in gwent. Contrary to your findings, the only thing available for AS / HFA people was completely inaccessible to young people- a befirneding group that met in the middle of the day in term time only. everything (of hat theere was) else was aimed at LFA, which is intriguing and probably just indicates the variability of services nationally, and also presumably reflected the fact that the NAS have ahome ehre in the village (outside my window LOL).

Presumably, yours was into the etiology of ASD and would have been at a higher level than mne, and that's not my area as such 9although did get an A for a study into SD alst year 9for Psychology) that looked at whether a particular study that found the location of specific abnormalities on the brains of children with SPD, and drew ideas about whether the proximity of thsoe areas could provide answers for the behaviours of children such as Sam who have SPD and atypical ASD with violent features, and suffered potential damage through a chronically mismanaged birth andlabour 9though natch didn't actually mention Sam LOL). twas only at undergrad level though, obv.

Serisouly considering an OU post grad in SEN during my year off, after this year, but finances will dicatte that one.

Interestingly, there's not much SALt provision for talkers here- seems to be a reverse policy. Stirling has minor but nonetheless present and obvious speech issues related to glue ear, and there's nothing for him, as with Sam's SPD. yet SALT seem 9fingers crossed) to be taking ds3 into the system.

It's very strabge the way that this varies, it needs to be hoogenised somewhat. I don't think a split of the NAS is the way forwards because as I aid size counts in charity sector, and also because as you said, kids vary- so often i've needed support about issues that are considered tyical ASD rather than HFA. Obviously my salnt on the genetics is experiential as well, but certainly the medics consider the link is there for both boys. My own personal belief is in the genetic predisposition triggerd by- well whatever triggers it (not one thing I am certain).

[gess]

To be honest I find the NAS increasingly irrelevent (which is shame as I'm involved in relaunching it here!)

SALT service wise there just isn't any for anyone- I think that's the case nationally. They are introducing something here that means that when deciding whether to provide a service the SALTS have to consider likelihood of getting better- no use at all for children like ds1 (not that he accessed it before that policy). Locally people with HFA like people with LFA can only really access SALT if they're in specialist provison (whether a HFA unit or a LFA special school).

Most of the services ds1 has accessed has been because of his learning disabilites (ie accessed through school).


I do think that dividing up would make it clearer what's being provided and where. And would make it easier to campaign for missing services. At the moment they can say 'we have autism covered because we have x, y and z' but x, y and z will not meet the needs of the entire spectrum (it can't possibly) so one group is missing out. Patchiness of provision probably does mean which group misses out varies from area to area.

[Peachy]

I can see about the accessed through school part, obv. many of us don't have access to specialist schools so that rather wipes out support for us. To a very significant extent for some- I am aware of two Mums atm who are sendingt heir ASD and AS sons to boardings chools because the LEA can't offer places in specialist schools, but the aprents cant cope without specialist input- both laothe doing it but feel they ahve no option whatsoever.

NAS is ectremely active here- perhaps because of the gap in services? Across the road is a residential unit and also a daycare setting, then we have access to a specialist development worker who took our case on at a high level because we were falling through so many gaps (remember SS's refussal to register DS1 because they 'don't do AS' Haven't been able to get them to respong to a request for assessment for ds3, by letter phone (wont put me through) or email?). That lady has a few other paid helpers who do a good work of co-ordinating thingsa nd bringing together whats out tehre, as wella s facillitating access for ASD people to services originally designed for other disbaled kids. they're also setting up the befriendings ervice, and I am really hoping DS1 will get his friend soon. hate the idea that option could be whipped away because of a new system. I seriosuly doubt tehre would be the wherewithal in the SS / charity sector to set up anything sufficiant for AS kids here, and I'd expect to see a lot mroe fall through the gaps, or end up being palced in te nads of groups such as homestart (happened a lot abck home)- fine short term for aprents, but a hiding to nothing for the kids, and a serious stretch on the finances of a charity close to collapse in many places.

[gess]

And THIS is why SN should be hidden - how DARE they.

[gess]

gah can't get it to link to the right bit. Aug 23 13:49:09. Hang on I'm off to time to rant. (forgot about it!)

[geekgirl]

well, Neuro obviously shouldn't be sticking her nose into a SN thread - you're right, it does show why hiding SN is A Good Thing.

I get so peeved off with people saying that it would be unfair on their other children if they had a sibling with DS. What a complete and utter load of horsecack.

I'd love for someone to explain to me how exactly dd2 cramps her siblings' style.

[gess]

She seems to think that having a disabled child is always a choice (what do you reckon? approx 99% of the time it isn't).

As for unsupportive? on a SN thread.

[geekgirl]

I guess the choice is 'getting rid' after diagnosis? Maybe an institution or something? Oh, I don't know.
She's obviously a nutter - but as per usual she just gets supportive replies...

[gess]

And I find it laughable that being able to see SN is so important because its educational when the phrase 'a DS child' is used repeatedly across the board. Obviously it's not an effective educational tool.

[needmorecoffee]

Whats this about SN thread being hidden? Have I missed something?

[eidsvold]

I think I may have finally found the thread tc was talking about and I could not help myself but post.

here is what I said - militant egocentric ( yup that is me - up my own arse) mother!!

from an egocentric mother of a gorgeous girl with down syndrome - I am saddened to read some of the comments posted here.

Having a child with down syndrome is not the end of the world. As to how it would impact on other children. My other two girls are not lacking for anything by having a sister with special needs. If you had taken the time to read other sn threads you would see that other siblings are also not missing out by having siblings with special needs. In fact research has shown that the siblings more often than not are more welcoming, inclusive, empathic and well rounded individuals.

Again - research has shown that if a prenatal diagnosis of down syndrome is given and the mother/parents have an experience of families who may have a family member with down syndrome they are 70% more likely NOT to terminate. Why - because they are able to make an informed decision based on experience not some doctors say so of what living with down syndrome is really like.

Who is to judge the worth of a life. I am curious as to those who indicated that they would perhaps terminate especially in terms of their current family. If one of those children you already had were to become ill or disabled in same way - would you love them any less - would you get 'rid' of them because they would impact negatively on those who are not disabled.

Just curious as to why people are so afraid of down syndrome and think the current medical stance which is to test as many was possible for indications of down syndrome is okay. What right has anyone to say my child is less worthy of life simply because she has one more chromosome than the next child.

What a slippery slope we embark on - what is the next focus - how many parents would abort a pregnancy if they could find out antenatally if their child had autism, or some form of brain damage or any number of conditions that may emerge later in life or be cause by birth trauma or accident.

[eidsvold]

did I do my job - was that educational enough do you think

[geekgirl]

great post eidsvold! Thank you for touching the sibling issue so eloquently - it never fails to rile me.
where is the thread? Link please!

[eidsvold]

here geekgrrl

www.mumsnet.com/Talk/2290/373641?stamp=070912071843

I read it and could not help myself - just had to post.

[eidsvold]

geekgrrl - dd2 loves all the places we visit with dd1. She thinks when she is a bit older - she will be going to kindy and school ( sn kindy) just like dd1. She thinks it is fab to go to morning teas for parents of children with down syndrome and play with all the kids, she thinks it is great to go to the movies and get free icecreams ( local lions club puts on free movies once a year for families who have children with sn) She goes to play with the physio and do words with the speechy.

TBH she does not see that her life is different to other children who may not have a sibling with sn. That is just how her family works.

[eidsvold]

geekgrrl - better not visit the thread - it is not for us.

I tried to share information and was basically told off so again - will refrain from trying to share my experience and what I have learnt.

[Ambi]

Thanks so much for ruining our thread with your offensive opinions.

We WERE a group of women 3 months off giving birth, supporting each other - but thanks to your incredibally rude and offensive and opinionated hijack you've managed to ruin this for us. I for one am absolutely fuming, I'm sure my raised blood pressure was just perfect for my antenatal appointment an hour ago. You've also managed to upset most of our other posters and actually brought one to tears. Stay out of our threads and keep your opinions to yourself.

[geekgirl]

Ambi, could you please be a bit more specific? What part of eidsvold's post is so offensive?

[Ambi]

I do not appreciate having opinions being shoved down my throat and accusing our thread of discriminating against Special Needs without knowing anything about the posters which were equally and understandably upset. To be accused by someone out of no-where of being against SN and then patting yourselves on the back for "educating us". Before barging into a support network with such accusations, get your facts right about posters.

[expatinscotland]

This isn't a private support group board, Ambi.

It's a public forum.

And people are allowed to share their experiences of Down's Syndrome and how it impacts their lives here.

[Ambi]

I understand that, but to barge into our thread to advise how we should feel was uncalled for.

[expatinscotland]

No, it isn't. It's a public forum. She never advised how you should feel. She shared her experience and opinions about Down Syndrome.

[Ambi]

People are also allowed to share their fears about pregnancy without recrimination. As I believe this issue has now been resolved with the Dec ladies, I will leave you be. I just wish that eidsvold hadn't posted that this morning, it's upset a lot of pregnant women when we obviously have enough to deal with.