Positive predictions

[purplepidjrobin]

I work with adults with learning difficulties somewhat like those of the DCs I've read about on here. I can't get too specific, but most of them have had a bare minimum of care for their entire lives. Many have been locked away in mental institutions. They have had no OT, SALT, or even meaningful activity. One person, who is perfectly capable of letting me know what she wants to wear, when she needs to be changed, whether or not she needs my help etc was, up until about 4 years ago, judged to have no communication . Others have been left to fend for themselves in the community and suffered atrocious bullying and abuse at the hands of NT peers.

It gives me hope to read of all your fights in these pages. Not because you have to fight, and it's really bloody hard work for you, but because this will not happen in the future. The input you are putting in means that there will be far fewer people as severly impaired as the wonderful guys and gals I work with.

Just thought you might like my humble opinion

[daisy5678]

Thank you. It doesn't feel positive now, but I hope you are right!

[LunarRose]

{smile]we hope it'll work that way...

[fightingthezombies]

Aww thanks pidj - that brought a tear to my eyes.

[intothewest]

agree with you totally- I too work with some lovely adults who would have gained so much from good physio ,OTs etc.-though they are getting better care now(and from people like you who obviously care) it is in some ways too little too late-It does make me want to fight harder for my own ds

[Ineed2]

, that was a nice thing to say .

[TheArsenicCupCake]

Awww thank you.. :)

it means a lot and I try and remember that my goal is for ds to be able to be a contributor to society.. And be able to have a life.

[chocolatespread]

You know, this is one reason I want to teach older children/adults with SN. I want to be in the system well ahead of DS2, so I know, understand it and am in a good position to place him where he needs to be.

Mum works with adults and when I was a teenager I used to go in with her when term times didn't quite coincide and she taught a gentleman whose only real disability was that he'd been institutionalised. He had a speech impediment, and for that he was institutionalised until his fifties. .

I agree that it is very heartening that people out there are working for best outcomes.

[purplepidjrobin]

I'm glad my thread is working the way I wanted - to give you some encouragement.

chocolatespread, have you considered domiciliary care? they are crying out for carers around here, and the hours are really really flexible - you don't even have to have a car, as long as you don't mind walking/cycling.

Keep up the hard work, everyone. It makes me really sad to think of the wasted lives of people like those I work with purely because nobody could be arsed to treat them like human beings

[chocolatespread]

Well, I suppose it's the term-time thing that is the attraction of education. DS2 is going through a really rough patch at school, which makes the idea of finding childcare for him (plus my other two, too) seem unrealistic.

[chocolatespread]

P.S. yes, this is a hopeful, encouraging thread.

[chocolatespread]

Yes, Starlight. I always think about this on Children in Need night. Of course it's very worthy and we support it, but I do think that worse than a vulnerable child is a vulnerable adult . But, like you say, Purple, there is increasing enlightenment and I'm sure outcomes are gradually improving.

[purplepidjrobin]

I just think of the look of delight on my resident with CP's face when we made gingerbread biscuits the other day. It really made me wonder if anyone had ever put a mixing bowl of ingredients and a wooden spoon in front of her - she's into middle-age :(

Also the look of horror on some of my colleagues faces... "But what if she dribbles in it" FFS! It's only a bit of flour and butter!

[chocolatespread]

"But what if she dribbles in it" - that sounds like something my MIL would say. It really annoys me that she patronises DS2 so. Giving people dignity is so so important.

[purplepidjrobin]

We sold ours today to raise money for equipment for activities. No complaints! We also made fudge (residents decorated boxes with glitter; no, nobody ate glue, I was watching), chocolate truffles (some of the hundreds and thousands accidentally spilled into the residents' mouths ) and meringue snowmen! Hopefully I can get some musical instruments and start a cacophony band

[purplepidjrobin]

chocolate - that's why I do the sewing I do. Why should a person who happens to still need nappies aged 7 have to wear skanky soggy jogging bottoms, just because someone can't be arsed to take two minutes to do up their zip? And why shouldn't a little girl who happens to have sensory issues wear pink trousers with lace and butterfly patches, just because she can't stand the label?

[chocolatespread]

Yes, Purple, absolutely, absolutely.

[chocolatespread]

Purple - you might have seen the thread, but DS2 has just come home with DH having just sat through a classical music concert. Wayhey!!!!

[purplepidjrobin]

I just spotted it - and posted. Chuffed to bits for you

[sneezecakesmum]

Hi purple I must say you are very brave to come on here and say positive things about SN, particularly CP.

My DD posted on here a while back with a positive story about a girl with CP, wanting to give reassurance to parents trying so hard to get through at the time.

Well, she was torn to shreds particulary by 2 of SN MN royalty. One of whom put the post on her facebook page inviting a lot of lurkers to join in the feeding frenzy on my DD. Her post was labelled patronizing, condescending etc. so you are lucky to have found nicer people.

My DDs DS has CP by the way so she was in no way patronizing. Luckily a few 'friends' recognised her and stopped the bitches (you know who you are!) in their tracks, but not before my DD decided never to post here again as she was so hurt. I. as you can see am still absolutely furious that MN royalty can get away with whatever they want.

Your stories are to me positive and encouraging, thank god these 2 people have not posted on your thread as you may have got the same treatment.

[purplepidjrobin]

Thank you, sneezecakesmum. I'm sorry your DD had to go through that, I haven't been here long but have so far found the SN section to be supportive and accepting. I guess the difference is that I work with people with SN, but am distanced in that I'm not a parent. So if I got flamed, it wouldn't be personal, iyswim?

I posted with the best of reassuring intentions, and hope my thread is taken by others in the spirit it was meant :)

[sneezecakesmum]

We also found until that point that SN is very supportive and accepting which is why it came as such a shock, especially as DD is in the same 'camp'. She had namechanged so they though she was an 'outsider'. I guess what it shows is that some people have very raw, defensive feelings about their LOs but most of the answers she got, once they realised who she was, were nice.

Like you she feels positive stories about SN are few and far between, especially when you are in the thick of it. It was only 2 regular posters, who should have known better who were so nasty. It was the putting of it on Facebook, that really took our breath away!

Its very sad as she has not posted since and there are some very useful stories here. You are vulnerable emotionally when you have a SN child without people you respected turning on you. [ssad] for DD.

[rabbitstew]

purplepidjrobin, I think what you said was fantastic. It's the fear that nobody will ever care for our children apart from ourselves that makes us so scared, so it's lovely to know that there are other people out there who might find them loveable or at least worth looking after properly. And, whilst I have found some very unhelpful people out there, I generally haven't found them ill-intentioned, just unhelpful (so I think I've been pretty damn lucky!), and I have also found people like you, who genuinely seem to understand and can help. Lots of them on this board on mumsnet (including you!)!

I think the greater the need of the child or adult concerned, the harder it is to find the number of people required who have the right understanding and ability to help effectively, which is why, maybe, parents of severely disabled children feel more bitter about it. Life genuinely is unfair, sometimes, however hard we try to fight against it. But it helps a lot to be able to believe that people are fighting with us to make things a little bit better and that we aren't really completely on our own. (I hope this isn't the patronising view of someone whose child doesn't actually have huge needs...).

[purplepidjrobin]

Thanks, rabbit there's a fair few of us around who really do give a shit, and are in it for the love - you just can't do this kind of work for the money!

It's really hard to keep answering the repetitive questions at the end of a 12 hour shift with as much enthusiasm as at the beginning, but you have to remember that that person needs the reassurance that you still like them/their routine is in place/help is there should they need it... Unfortunately there are lazy people out there who do it because the hours appeal or they have no qualifications and can't get other work. That said, some of my best colleagues have been alsmost functionally illiterate with no GCSEs!!

IMO we are at the beginning of a social change wrt people with SN. Remember, Autism was only "discovered" in the 40's and people like Lorna Wing were first published 1981 I think - the year I was born . Nearly everything we know about the hidden disabilities has been found out in the last 20 years. Couple that with the relaxing of the segregation and homsexuality legislation less than 50 years ago, and we really are the pioneers of a massive change in society. The downside is that many take advantage of the apparent relaxation of these social rules - I'm thinking punks, chavs, etc. The upside is that, viewed on the long term, tolerance of difference in race, sexuality, cultural/religious background, or ability is gradually increasing.

In 50 years, there will be far far fewer people like those I work with purely because they will have had access to decent and ever-improving treatments and therapies. I will never be out of a job, because people will always need extra support for one reason or another, but I'd like to think it might one day happen :)