Julia Hollander responds

[emkana]

www.motherstory.co.uk/?cat=9

Remeber though that guidelines are exactly that.

If you can fire regs at them it's far better as they have less room to squirm out of what is in regs.

A new and fertile source is the HRA, something so good the tories want to dump it!!

2shoes - agree completely re:difference in areas. It has taken 13 months after referral for DS to get a paed appointment for ?asd/learning difficulties and 8 months for a first SALT appointment. But people I know in other areas have had their child seen and diagnosed within 2-4 months of the referral. Liverpool doesn't even have portage!

In many areas parents can get their kids SALT appointments just by writing in to the local SALT department. But in Liverpool HV/GP gatekeeps, and it's very hard to get a SALT referral before 3. Which is criminal given that there is then a further 8 month wait after the time the health pros agree that something significant is wrong.

"And Talies - you don't have a severely or profoundly disabled child. Many of us commenting here do so quite pretending to have some great insight. We live it day in and day out and therefore are allowed to comment on the way in which she presents profound disability."

bang out of order.

Er why? I haven't said Tallies can't comment.

I was responding to Talies repeated voicing of his belief that we're not allowed an opinion or we shouldn't state it or we'rre being judgmental in our distaste of the JH story. Tallies has presented himself repeatedly in his posts as knowing just what it's like for parents to have a profoundly disabled child. Yet he doesn't have one himself. And tells those of us that do that we're not allowed our opinions.

I think that is pretty bang out of order myself.

With you on that Yurt. Talies, particularly in his earlier posts, took a very "knowledgable" standpoint, but unlike the rest of us, seemed reluctant to be open about from where he'd acquired his "wisdom". Its now clear that its not from parenting a child with severe SN.
Julia Hollander also assumes the viewpoint of someone who has parented a child with SN. Which she hasn't. Parent is a verb as well as a noun.....

there are far more serious things in life than what JH thinks or writes. There are far more serious things being discussed on mumsnet.

UncleBulgaria, that is your opinion. Judging by all the threads so far a lot of people find this subject very worthy of discussion, and that is their prerogative. If you don't find it so I suggest you just don't click on the thread.

Uncle B, who are you to tell me what is serious or not?
Maybe its not important to you, you are obviously very bored then to be joining in this discussion.
Its serious to me, I feel someone who has a voice in the media is presenting a negative view of family life with a child with SN. There are also many holes in the way she choose to present herself. To me its important to challenge those.
If its not serious to you, go away.

Er how severe disability is presented to a wider audience is pretty serious to my family. It has an impact on our daily life. Lucky you if it is irrelevant to you.

What is HRA?
(higher rate allowance?)

Anyway there's not exactly a rule that only 'important' topics are allowed on mumsnet. There are enough threads on bumsex.

it is very serious to a number of parents on the sn section of mumsnet - those who parent - yes that is right - parent children with severe sn. It is a very large part of their life and so experience makes them qualified to comment.

Serious things on mumsnet other than a woman who is trying to portray people with sn as less than worthy of dignity and celebration. This is the sort of shite parents face every day and it is bloody serious when someone voices an opinion which states that your child really does not have a right to be alive, should be put away in a home, etc etc etc - that is now being further reinforced by media once again.

Yes active conversations displays a wealth of very serious issues to be discussed - celebrity marriage break ups, heather mills greedy weird antics, sayings from the past, games and so on.

Guess that is more serious than standing up to discrimination and ignorance that is being lauded and pushed in the media at this time regarding the parenting of children with serious sn.

yurt i read that football forum - i sat there with my mouth open at the comments - we are little ickle pussycats compared to that.

here we go again. someone I have never heard of stirring it all up.

yurt I just recomened that footie forum to my db(ardent footie fan) he will love it on there thanks.

uncle bulgaria - your point(s) being [hmmm]???

Sorry for the shorthand, HRA is the human rights act where case law is starting to set out the extent to which government should but out of peoples lives but also sets out the states duty to intervene to support families and prevent people suffering harm.

I don't want to stir things up on here again, no point, but those who say that I have not parented a child with severe disability of my own are factually correct.

Those who claim i know nothing of the dilemas, pressure and frankly sh** dumped on parents of children with profound and complex needs are just misinformed.

I have sat with the parents who have struggled for years to meet the complex needs of their children and arrived at the end of their tether.

Unsupported, condemned to struggle and struggle and struggle some more. To have asked for help and told no at every turn.

Yeah I have been there and felt for them.

Whether they threw in the towel at 5 months, 5 years or 50 years, in the end the task proved too much.

I will condemn the the society that devalues people because they have disability or the care system that doesn't care, but the parents of disabled children, never.

you know not all peads are crap. I have never met one who has written dd off. they have only helped. same with sw's have been lucky to have only had good ones who have been very keen to help.

2shoes, I don't think all of them are crap either. I come across fantastic people every day in my job who really do make a difference and have the needs of people with SN as their absolute priority.

I always maintain that the sign of a civilized society is how it meets the needs of its most vulnerable people. Uk is far ahead of many countries ( I used t olive very near the main teaching hospital in a remore part of Eastern Turkey and the memory of the public buses which stopped outside carrying Kurdish villagers with the most appalling disabilities you have ever seen (most of whom were dragged/carried in by their mothers) is seared on my soul I am about to go and visit my dh who is working in Bangladesh and I know it will be beyond belief.

Nevertheless, I digress. The point remains that those of us who work in this field should operate from the basic premise that life is already tought enough for peopel with a child with SN. Therefore the assumption that they should suffer more through the red tape and bureacracy that ring fences our services is nothing short of grotesque. These families need a five star service through which they can move seamlessly,not the shit they battle everyday.

I reckon (talking of mixing the serious and banal) that a reality show life swap series which lets people swap children (SN and NT) would be a terrifc idea and a hugely effective way of getting the message over.

Thanks for clarification Tal.

Well said moondog, Bang on the money (no pun intended) people with needs should get them met.

using a completly different analagy, how come my neighbour who is a director of a social service department get get agreement for 5000 pounds a week for services to a teenager, but cannot get 500 a week for residential care for the elderly.

DH and I have discussed SN/NT swap before, but we'd be too scared that we wouldn't get ds1 back in one piece.....

Seriously though, wouldn't it be a powerful way of driving home the message? More difficult (and doubtless morally questionable) with a child who is severely autistic but imagine say, people battling with hoists and wheelchairs and ringing SS?

Maybe an undercover thing needed like that woman who posed as a nursery assistant a few weeks ago.

moondog gotta tell you about dd's SALT.
dd has a C.C.S book and for years it has been crap. we never used it as it was so big and so user unfreindly.
she gets a new SALT within a month she has a beautiful new CCS. she loves it. we can use it. I love Her SALT

Tat is brill 2shoes.
(But what is a CCS book?!)

can't say the first word as it is the name of her school. communication system. big book with symbols but not PECS.

Point taken fio fio,

"throw in the towel" was a bad choice of words.