TV Prog re Looking After Child with Disability - prob not for Pollyannas!

[Davros]

There is a programme on TV next week called When A Mother's Love Is Not Enough. It is on BBC1, Tuesday at 10.35pm and is presented by Rosa Monckton who has a daughter with Down's Syndrome (and is remembered mostly as Princess Diana's friend). The programme focuses "deliberately and courageously" on the hardships that come with caring for a child with disability, rather than the joys. So it may not be for everyone! Maybe it would be a good idea to persuade other people to watch it, rather than ourselves, e.g. your in-denial relatives or unhelpful professionals?

When we have had discussions about this sort of thing in the past on MN they always seem to cause a divide and some trouble! I have am more and more alarmed at the clear progression towards the "sanitisation" of Autism and disability in general. I feel that a lot of the issues have become "ideologised" to the point that you have to think very carefully before saying anything remotely negative about the experience. I'd be interested to know what others think after this programme has aired. It may be a load of rubbish that makes me want to put my foot through the screen (my usual reaction) or it may be a refreshing change from the usual.

I would not remove my daughters disability either, I believe she is who she is - disability or not.

'But I also worry about the idea that is becoming pervasive that with better services and an improvement in peoples' attitudes everything would be fine and dandy and we'd all live happily ever after.'

I so agree with you.

Good luck with DLA Angry. They FINALLY awarded ds1 DLA with no end date this year.

Angry the problem with that system (and it looks possible) is that many of us do not qualify for support from SSD (who would manage the scheme), ATM we dont qulify for SSD but have statements (one MS< one SNU) and get DLA at HR and MR with LR mobility for both. My guess is the system debated will see us lose it all rather than offer what we need, meaning we would lose prety much everything- I wouldnt get CA so we would lose our home, the boys would lose all SN input they get....

I just have a very funny feeling thats how it would work out

DS3 got DLA until 16 last year

Ds1 has his renewed every two yeras, due agin in June.

Nit having to face two (ds3's was annually) every other June is a huge thing for me.

How have you managed to get it awarded for longer? Have the professionals on your form suggested they do this?

My daughter has no specific diagnosis apart from moderate-severe learning disabilities, microcephaly and epilepsy....I wonder whetherthe lack of an 'exact' label is making it more difficult to get it awarded for longer? I hardly have time to fill the forms out as it is.

Peachy, we have a good Children's Society project (resource centre) close to my home that covers quite a wide area. One of their aims is to provide support for those children who otherwise would get no help off social services

That sounds good AFM, I find we miss out on alot because we live in a 'nice' village close to an under resourced city with big areas with issues- understandable surestart etc is very targetted into those areas,and we don't get a lot- I worked for somethink akin to a childrens centre before we moved here and it ws great, sadly since we moved here I have had to become a FT carer so can't earn and DH was amde redundant and has had to go back top study- so although we have the blessing iof living here, we don't have the same resources others have here to get access to services. It's a bit of a catch-22 with a smattering of bad luck (the redundancy) really. There will always be people almost hitting a criteria whever you set the barrier (DS3 is severe so does qualify but there's a very long waiting list for assessment- been waiting since March).

We did have an NAS befriender for a while last yera, for ds1- that was useful.

Angry- I think it just dawned on them that if ds1 was non-verbal at 10, then he wasn't going to miraculously move off higher rate care.

They did contact the school this time (first time ever) so maybe the school were very blunt. I think every child leaves on P levels, so it sort of sets the scene.

Can I go back a bit? HI HITC!! HOW ARE YOU? Still on 2DDs, living in the same place, still at DK? Would love to meet sometime.
I just think anything that doesn't conform to the PC-ised, ideology-led view of disability makes a good change. I agree with HITC that there are lots of different experiences and lots of us have lots of those experiences, things are not just one way all the time and we don't feel the same about them all the time.
I know that SaintlyDameMrsT feels that she has more perspective and is generally happier because of her experiences with her DS1. I'm sure that's true but I have also observed for many years that people are not different if they have a disabled child, you still get the scatty, the mean, the generous, the late, the punctual, the sharing, the "planet us" people. I don't think many people would fundamentally be very different if they had "NT" lives. But I find that we (DH and I) are much less competitive with DD than many other parents, but I suspect we would be like that anyway AND we are somewhat older than most of the other parents. I know some right miserable parents of kids with disabilities who wouldn't lift a finger to help anyone else, but also some who are great fun and go out of their way to help other people, I think the seeds were already there.
Anyway, I am droning and haven't really said what I mean in a clear way!

"But I find that we (DH and I) are much less competitive with DD than many other parents,"

Ha ha, yes I wonder if that's just 'us'. I've always assumed it's triggered by ds1, but it might just be that we're both far too lazy to be competitive about ds2 and ds3 and would have been like that anway.

I have met SO many competitive 'sn' parents that I feel I cannot comment

lol - yes that's another issue.

I have too afm, me and DH joke about it!

Hi Davros! Yes, still just 2 DDs (that's plenty enough!) but now minus a DH. Still live in the same place, sort of still working in the same place. Yes, meeting up might be fun!

I agree that having a child with SN doesn't fundamentally change who you are, but I do think it can help you get a bit of perspective that may be lacking otherwise.

And it can force you into learning certain things. Like patience. I am not naturally a patient person, but I've had to learn to be, with dd1 at least (some of the time anyway!).

I've just noticed what time this programme is on. Why so late? Is it so shocking and unpalatable? Or do they just think no-one is interested?

What are SN parents competitive about ? I have not met many others in RL and have not come across this (yet). Is it boasting about how wonderful and well advised their choice of intervention was for the child and that it is all down to them that their child is forging ahead ?

Usually about the disability itself ime.

One forum I used to go on has that thing where you have a message/ tagline that always comes up at the bottom of your messages, saying who you and your kids are and what their needs are.

One mother took great delight in saying one day, 'that's two more conditions to add to my tagline!' - she had written: 'speech and language difficulties, auditory processing difficultes, language difficulties, speech immaturities, speech disorder, hearing disorder' and a few more things about her son. It was like a competition to see whose child had the most SN!

And then the random lady I met in the park once who was about J getting a full time Statement etc.

People said to me at the time, and it was true, that it's about a) people validating the problems that they have with their child and b) provision being so crap that people take out their stress at fighting for services on those who are getting better ones.

And there have occasionally been competitive moments on here, definitely - the 'oh-well-my-child-has-a-worse-disability-and-your-child's-is-easy-peasy' type attitude. But not often. I think this is generally a supportive board where people understand that we haven't walked in each others' shoes but we don't need judging. Unlike some of the other MN boards!

Ah GMMS, I make comments like that about the boys but I do mean it with a massivesense of irony and usually go away and weep- or laugh hysterically. When we were told ds2 has ishoos they popped tissues on the table (as it was school who have ds1 and know about ds3) and they were surprised when I laughed but it wasn't real humour IYSWIM, just the massive sense of the ridiculous that I am blessed with

Oh I know, Peachy. It's the same kind of I'm-on-the-verge-of-losing-it-totally sense that I got when I got a letter from CAMHS recently describing the CBT sessions that J was having and saw the words 'J meets diagnostic criteria for OCD'...I was like, aaaaaaaaaaaaaaaaaaaarrrrrrrrrrrrrrrrhhhhhh, yet another dx!

This website wasn't like that. It was a very odd place, with lots of competitiveness about who had it worst and comments like 'well I don't think you're entitled to DLA because my son's far worse than yours and you should count yourself lucky that he gets help at school because mine doesn't and you don't even have toileting problems do you? Do you?'

(I'm actually not exaggerating, sadly.)

"And then the random lady I met in the park once who was about J getting a full time Statement etc."

Oh I've had a lot of that. "You're so lucky because......" or "it's ok for you because...." I remember one random woman ranting on at me about how it was so unfair that ds1 got SALT when her son didn't. Her son was doing GCSE's!!! I was tempted to rant on about that being unfair when my son will leave school below level 1, but I took the rolling eyes and then phoning a friend to rant option instead . Honestly I don't know what possesses people. When they start droning on about it being unfair that ds1 gets services now I just say with a smile "swap?" and that usually shuts them up.

I've just had one on my YouTube video. A comment about how dare I describe my son as severely autistic, when hers (aged 5 :rolls eyes here is more severe. I was tempted to tell her to bog off, but gave a more considered reply.

never met competive sn parents in rl, but have on her, some seem to want to out woe you iynwim, tbh in the end you just give up posting anything much as it is not worth it.

I see what you mean - that some parents may feel that their child's SN ( or form of it) needs to be the main priority for society. I think it is hard to keep perspective though as parents may be consumed by anxiety to know how 'bad' or 'good' their child's SN is. I spoke to someone at a social event once who had a child with SN and when I mentioned that DS1 is autistic, he said hopefully ' Is he very severe then?' He seemed to want to find someone 'worse off' to make himself feel better - but in many ways it's hard to blame him or judge him as parenting an SN child is so isolating that it's no wonder that you can lose touch with tact and reality. I don't really know the answer to the parent's question as I only know my own experience of SN. But I do know that it's hard to stop making comparisons with other ASD children - if you meet one who is far ahead of yours, you can't help feeling sad but it should not mean that you feel pleased to meet one that is further behind but human nature takes over at times. As long as you can keep a rational overview of your thoughts that's all you can expect.

Oh we used to call that bottoming cyber. People used to position themselves to place ds1 at the 'bottom' of the pile so they could feel better about their own child!

I have found since ds1 moved to an SLD/PMLD school that the competitive stuff more of less disappeared. I think everyone there has enough to deal with themselves and I think we tend to see ourselves as being in the same boat. So we talk about more interesting stuff. But I remember being bottomed a lot when ds1 was small.