Mumble Report post Posted August 23, 2008 If you could have one thing either for your autistic child, for yourself as a parent of an autistic child or for yourself as an autistic individual, what would it be? What would be the one service/provision/etc. that could really make a difference to you? Do we need more of what we have, to approach what we have from a different angle, or to have something totally different? I'm just curious, because I know that when, for instance, my GP asks what would help me, my mind goes blank but then I think of plenty afterwards, or I'll be in a situation and think "if only...". I was just wondering, are our wants very similar (and hence could be addressed by addressing the gap of what doesn't currently exist) or are they as individual as we are ourselves? Quote Share this post Link to post Share on other sites
Diane Report post Posted August 23, 2008 I'm just curious, because I know that when, for instance, my GP asks what would help me, my mind goes blank Hi Well would you believe it my mind has gone blank. I am thinking hard searching for something just can't think. It will come to me when I have logged off. Quote Share this post Link to post Share on other sites
darky Report post Posted August 23, 2008 Cor that's a tricky one!! There are a few things!! For me it would be even adequette provision for higher functioning Autism, coupled with adequette training and understanding. The problem is, Autism is so complex. No two are the same. It is pretty difficult to consider what would be adequette provision for any one person. So I guess a highly trained key worker who co-ordinates health, social services and eduction needs, that continues into transitions into work, housing etc. Not everyone would want something like this though, so I guess the most important thing is a service tailored to suit the needs and wishes of the individuals. If it were up to me, I could quite happily live on an Autism friendly island with only people and their families touched by ASD. Quote Share this post Link to post Share on other sites
pearl Report post Posted August 23, 2008 I should be packing ... The ONE thing? Post-18, AS - specific counselling/mentoring/life coaching/life skills/social skills/befriending etc etc etc, either free or at minimal cost, nationwide so gettable-to. At the moment, theres just me & mr p. Quote Share this post Link to post Share on other sites
ScienceGeek Report post Posted August 23, 2008 The ONE thing? Post-18, AS - specific counselling/mentoring/life coaching/life skills/social skills/befriending etc etc etc, either free or at minimal cost, nationwide so gettable-to. At the moment, theres just me & mr p. Agreed to all of that. Quote Share this post Link to post Share on other sites
lynyona Report post Posted August 23, 2008 I would have to wish the same as pearl i think becuase thats the thing i think he d most benefit from . Quote Share this post Link to post Share on other sites
Cat Report post Posted August 23, 2008 Pearl for PM you would get my vote Cat Quote Share this post Link to post Share on other sites
Enid Report post Posted August 23, 2008 Im packing Darky!!! I would like a super duper respite centre, but like a home from home, so he/they wouldnt think they were being sidelined but going on holiday! that could be accessed at all times. failing that a 24hr "person" on standby in case of emergencys ie; meltdowns. not much to ask is it Enid Quote Share this post Link to post Share on other sites
elun1 Report post Posted August 23, 2008 Help with difficulties as they are actually happening rather than when it's too late Elun xx Quote Share this post Link to post Share on other sites
Tally Report post Posted August 23, 2008 If you can approach Social Services with a list of what you need and reasons why it would help, your social worker should go away and build a case for you, no matter how unusual your request. If you can also calculate the cost, then you have basically done their job for them. In the past, Social Services have awarded funding for service users to attend drama classes and purchase a season ticket to a football club. I really need someone to handle household repairs for me, from making the initial enquiries to being here when the workman comes, knowing when to offer them a cup of tea, handling payment, etc . . . maybe I just need to move to rental accommodation I would also like some support in work. I don't know what exactly I need at the moment. Maybe just some increased awareness would be all it needs for people to cut me some slack in an informal way. I think a lot of people with AS are under- or unemployed, but could make a good contribution with the right support. Quote Share this post Link to post Share on other sites
sesley Report post Posted August 23, 2008 If you could have one thing either for your autistic child, for yourself as a parent of an autistic child or for yourself as an autistic individual, what would it be? What would be the one service/provision/etc. that could really make a difference to you? Do we need more of what we have, to approach what we have from a different angle, or to have something totally different? I'm just curious, because I know that when, for instance, my GP asks what would help me, my mind goes blank but then I think of plenty afterwards, or I'll be in a situation and think "if only...". I was just wondering, are our wants very similar (and hence could be addressed by addressing the gap of what doesn't currently exist) or are they as individual as we are ourselves? a place to teach p how to eat more food, he is stuck on a formula that is literally baby food i can't get him to try new flavours and textures and he is is 9 this year. he suffers fromregular bouts of constispation he won't usew school toilets and i so wish to see him sink his teeth in to a burger or pizza or a cream cake./doughnut Quote Share this post Link to post Share on other sites
smiley Report post Posted August 23, 2008 (edited) Compassion........ Understanding...... My vote would be for one person - just ONE person, who helps & fights for the family / individual with all the docs, ss, respite, schooling, etc....... That person has you / your childs best interests at heart - and no other agenda........ Having a child with an ASD is hard - having to fight for every single little teeny tiny thing is why i had a break down......... Edited August 23, 2008 by smiley Quote Share this post Link to post Share on other sites
Cat Report post Posted August 23, 2008 Smiley we are already supposed to have this 'One Person' It is written into the autism exemplar which is part of the National Service Framework for children, as part of 'Our Journey' through this maze we call autism. It says after an assessment has taken place, and this is a direct quote from the exemplar 'The assessment team and Gerorge's parents agree that the family need the support of a Key Worker and the families Health Visitor is appointed to this role. It is agreed that the Key Worker should be the main contact with the family and take responsibility for co-ordinating meetings and liaising with professionals to ensure that all agreed support is acted on. The Key Worker should also take responsibility for communication and making sure that everyone has up to date information about George' I would love to know if there is anyone who has ever actually been asked if they would like a Key Worker or agreed that they needed one with the professionals. Key Workers have long since been a bug bear of mine. They were written into an exemplar which is supposed to set out the markers for good practice and yet most parents have yet to be appointed a Key Worker with many not even knowing that they should exist. So needing 'One Person' has already been clearly identified by the Government sadly few LAs actually follow the guidance which is why we need legislation. Cat Quote Share this post Link to post Share on other sites
smiley Report post Posted August 23, 2008 Why am i not surprised............. Quote Share this post Link to post Share on other sites
Enid Report post Posted August 23, 2008 amazing Cat, the one thing we all want, is the one thing we should actually be getting!!! couldnt make it up really. Enid Quote Share this post Link to post Share on other sites
Cat Report post Posted August 23, 2008 amazing Cat, the one thing we all want, is the one thing we should actually be getting!!! couldnt make it up really. Enid No Enid you could not make it up. Sadly far too many LAs 'are' making it up as they go along Cat Quote Share this post Link to post Share on other sites
bikemad Report post Posted August 24, 2008 Id like all the 'professionals' such as cahms to actually listen n take on board what you say rather than have to fight n fight n fight all the way to get beleived n get help. Also no offence to any teachers on here but id like a teacher who actually cares about the child and wants to help them n implement any programmes such as say O/T have sent them instead of poo hoo it n expect the poor kid to just 'fit in'. Can you tel im peed off at ds's school n also how long the battle is taking!!!!! Quote Share this post Link to post Share on other sites
elun1 Report post Posted August 24, 2008 We have a key worker. I'd love to say it makes a difference to everyday life but it makes none whatsoever!! Quote Share this post Link to post Share on other sites
warrenpenalver Report post Posted August 24, 2008 Id want a mental health system that looks at quality of life as well as risk rathar than the cash strapped current system that is more interested in protecting the public or patients from direct physical ham only. Just because im not self harming or attempting suicide doesnt mean that my world is great or even approaching ok. Quote Share this post Link to post Share on other sites
soraya Report post Posted August 25, 2008 A friend for Nick, he is so desparate to have a few friends. Education that does not have to be fought for, we should have the best that is out there for our kids, and not have to go through the big fight with the LEA Quote Share this post Link to post Share on other sites
bikemad Report post Posted August 25, 2008 A friend for Nick, he is so desparate to have a few friends. Education that does not have to be fought for, we should have the best that is out there for our kids, and not have to go through the big fight with the LEA Totaly with you on that one. Breaks my heart seeing my ds on his own all the time n lonely. Quote Share this post Link to post Share on other sites
Zosmum Report post Posted August 25, 2008 Don't know really Just someone who listens then acts to help rather than listens, nods and nothing....... Oh and not having to fight for every little thing Quote Share this post Link to post Share on other sites
single autie mum Report post Posted August 25, 2008 (edited) ID LIKE A FRIEND FOR R TOO, SOMEONE WHO HE COULD SEE ON A REGULAR BASIS AND ACCEPT HIM FOR WHO HE IS ID ALSO LIKE A PLACE TO TAKE HIM TO ENJOY SOME LEISURE TIME/FUN THAT WOULDN'T BE FULL OF STARING PEOPLE AND WOULD HAVE UNDERSTANDING LEADERS ,WORKERS AHH IF ONLY Edited August 25, 2008 by single autie mum Quote Share this post Link to post Share on other sites
alanm Report post Posted August 27, 2008 (edited) The ONE thing? Post-18, AS - specific counselling/mentoring/life coaching/life skills/social skills/befriending etc etc etc, either free or at minimal cost, nationwide so gettable-to. Agreed with these Pearl , also Prospects (and/or similar) going nationwide and more support with employment, particularly some sort of services to "go between" AS applicants and employers. Edited August 27, 2008 by alanm Quote Share this post Link to post Share on other sites
Canopus Report post Posted August 27, 2008 Agreed with these Pearl , also Prospects (and/or similar) going nationwide and more support with employment, particularly some sort of services to "go between" AS applicants and employers. The problem is that employers just don't want to know about people with AS. In nearly two years Asperger Technical hasn't managed to get a single company on our side or capture the enthusiasm of a single employer. Another issue is that a high proportion of jobs in the private sector are accessed via employment agencies and direct advertising is quite rare. Companies often just use one or two agencies and don't want to use any more, so are unlikely to want to use an Asperger support organisation as a means to hire staff. Quote Share this post Link to post Share on other sites
LizK Report post Posted August 30, 2008 For him - decent speech therapy provision and early intervention.Not the woeful NHS provision that they protend is absolutely fine For me - a babysitter so DH and I could have the odd night out Lx Quote Share this post Link to post Share on other sites
Cariad Report post Posted August 31, 2008 A school that is right for him without being mixed with behavioural children who teach him how to be 100% worse, and he sees this as the norm. Quote Share this post Link to post Share on other sites
Enid Report post Posted August 31, 2008 A school that is right for him without being mixed with behavioural children who teach him how to be 100% worse, and he sees this as the norm. Amen to that one! <'> <'> Enid Quote Share this post Link to post Share on other sites
oxgirl Report post Posted September 1, 2008 A friend. One for Jay and one for me. Oh no, that's two things isn't it, oh well, call me greedy. ~ Mel ~ Quote Share this post Link to post Share on other sites
Flora Report post Posted September 1, 2008 Peace on earth Flo' Quote Share this post Link to post Share on other sites
