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Has Anyone Got To A Point Where It Has Worked Out Okay? - Carers UK Forum

Has Anyone Got To A Point Where It Has Worked Out Okay?

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Hi everyone,

I've been a member for a long time but I don't post very often so I thought I would reintroduce myself before I start moaning :)

I'm a single parent to a 17 year old son who has complex needs. I have cared for him 24/7 without a break since the day he was born. I don't have a supportive family (they're so abusive I try to keep away from them as much as possible and I don't let them near my son), I had to give up work to look after him so money is always tight and I've had horrendous experiences with public sector workers over the years, to the point that I actually think I might have some sort of PTSD type thing now as I get awful physical symptoms from something as simple as asking for a prescription.

I home educated him for ten years due to the dreadful lack of suitable provision when he was younger. I had planned for him to start secondary school at the age of 11 but he went down with some sort of illness that has never been identified and was almost completely housebound for three years - we never found out why or what was going on. I then tried to get him in to a special school at age 15 with a view to him going to college at 16, only to discover that there literally wasn't a single place that wasn't over an hour's drive away. We moved to a different county to get him in to a college that we were able to live three miles away from and it has been a disaster. The Local Authority pay no attention to the SEN Code Of Practice and even after we won our appeal, they still didn't put appropriate provision in place until the second academic year, by which time his health had deteriorated severely due to the lack of support. He's now on a reduced timetable and has regressed, making the whole experience a complete waste of time.

I feel constantly that I am talking to brick walls when explaining my son's problems and how to meet his needs. His assessment information for the college is over 80 pages long and even with all of that they still don't get it and are still suggesting he does things that are just way too much for him to cope with. I have long since given up with doctors as none of them seem to understand anything beyond medication and, as he doesn't have conditions that can be cured with meds, there's really nothing they can offer.

I've been looking around at adult care and leisure facilities in the area and each thing seems to be the same. The sorts of activities they put on are of no interest to him and for some reason all the social groups we've been to have very loud music playing constantly, which drives him nuts. There's very little, it seems, that he's going to be able to do and I've already had a row with the adult services social worker when she phoned about arranging the assessment; she sounds like an arrogant idiot and I am sick and tired of dealing with people like her. My son's needs aren't difficult to meet, but people do need to be sensitive to his environment and understand that he doesn't show stress in an obvious way and his reactions are often delayed. No-one seems to be willing to listen to me and the end result is that I just feel I'm constantly working harder to put right the things that other people do wrong.

I'm contemplating moving again, nearer where we lived before so that at least we are back near friends. I've pretty much resigned myself to either looking after him myself for the rest of my days or having to hand him over to someone who will decimate his health in three months flat and neither option appeals to me!

Not really looking for advice or suggestions, in all honesty, I'm just wondering if anyone has found a way to have a life of their own whilst their loved one is well looked after by other people? I feel like Indiana Jones constantly looking for obscure treasure :) I don't need red carpet treatment, just for him to stay healthy and not be wrecked when other people get involved. Has anyone got a good experience they can share? I've met a lovely couple locally who are in their eighties and they are still having to do a lot for their disabled daughter even though she's been in a care home for twenty years and has a full care package in place. It's really got me down; I'd always assumed that eventually I wouldn't have to do this anymore but I feel now that even if he doesn't live with me I'll still have to do a lot of the work.

Sorry for all the moaning. If anyone has a good story to share I'd love to hear it :) Thanks in advance :) x

PS I feel I should end on a positive note; he switched from DLA to PIP when he was 16, the assessor was lovely and he was awarded Enhanced Rate for both categories so I do have one positive story to look back on :)
Hi MWC,

You tale is so much like mine with M's, especially the talking to the brick wall bit.

I would suggest that you start looking outside the state provision. M went to Fairfield Opportunity Farm (now "college") in Warminster, for 3 years, it was really good for him, turned him from a dependent boy to a much more independent young man. We went back there last week, as we were passing by, he asked why he had to leave? I explained it was a 2 years course, I managed to cajole them into an extra year as he was progressing so well.

He was a boarder, came home regularly, Each weekend home was 2 round trips of 120 miles, good job I was younger and fitter in those days.

They are classed as an independent college, I can never remember the name of their association, I expect Melly will when she reads this!

It only had about 30-40 students I think, so everyone knew everyone else and it wasn't pressured.
Hi again MWC,

BB is referring to NATSPEC; https://natspec.org.uk/about-us/who-we-are/natspec/

Melly1
MumWhoCares wrote:
Mon Oct 21, 2019 5:03 pm
Hi everyone,

I've been a member for a long time but I don't post very often so I thought I would reintroduce myself before I start moaning :)

I'm a single parent to a 17 year old son who has complex needs. I have cared for him 24/7 without a break since the day he was born. I don't have a supportive family (they're so abusive I try to keep away from them as much as possible and I don't let them near my son), I had to give up work to look after him so money is always tight and I've had horrendous experiences with public sector workers over the years, to the point that I actually think I might have some sort of PTSD type thing now as I get awful physical symptoms from something as simple as asking for a prescription.

I home educated him for ten years due to the dreadful lack of suitable provision when he was younger. I had planned for him to start secondary school at the age of 11 but he went down with some sort of illness that has never been identified and was almost completely housebound for three years - we never found out why or what was going on. I then tried to get him in to a special school at age 15 with a view to him going to college at 16, only to discover that there literally wasn't a single place that wasn't over an hour's drive away. We moved to a different county to get him in to a college that we were able to live three miles away from and it has been a disaster. The Local Authority pay no attention to the SEN Code Of Practice and even after we won our appeal, they still didn't put appropriate provision in place until the second academic year, by which time his health had deteriorated severely due to the lack of support. He's now on a reduced timetable and has regressed, making the whole experience a complete waste of time.

I feel constantly that I am talking to brick walls when explaining my son's problems and how to meet his needs. His assessment information for the college is over 80 pages long and even with all of that they still don't get it and are still suggesting he does things that are just way too much for him to cope with. I have long since given up with doctors as none of them seem to understand anything beyond medication and, as he doesn't have conditions that can be cured with meds, there's really nothing they can offer.

I've been looking around at adult care and leisure facilities in the area and each thing seems to be the same. The sorts of activities they put on are of no interest to him and for some reason all the social groups we've been to have very loud music playing constantly, which drives him nuts. There's very little, it seems, that he's going to be able to do and I've already had a row with the adult services social worker when she phoned about arranging the assessment; she sounds like an arrogant idiot and I am sick and tired of dealing with people like her. My son's needs aren't difficult to meet, but people do need to be sensitive to his environment and understand that he doesn't show stress in an obvious way and his reactions are often delayed. No-one seems to be willing to listen to me and the end result is that I just feel I'm constantly working harder to put right the things that other people do wrong.

I'm contemplating moving again, nearer where we lived before so that at least we are back near friends. I've pretty much resigned myself to either looking after him myself for the rest of my days or having to hand him over to someone who will decimate his health in three months flat and neither option appeals to me!

Not really looking for advice or suggestions, in all honesty, I'm just wondering if anyone has found a way to have a life of their own whilst their loved one is well looked after by other people? I feel like Indiana Jones constantly looking for obscure treasure :) I don't need red carpet treatment, just for him to stay healthy and not be wrecked when other people get involved. Has anyone got a good experience they can share? I've met a lovely couple locally who are in their eighties and they are still having to do a lot for their disabled daughter even though she's been in a care home for twenty years and has a full care package in place. It's really got me down; I'd always assumed that eventually I wouldn't have to do this anymore but I feel now that even if he doesn't live with me I'll still have to do a lot of the work.

Sorry for all the moaning. If anyone has a good story to share I'd love to hear it :) Thanks in advance :) x

PS I feel I should end on a positive note; he switched from DLA to PIP when he was 16, the assessor was lovely and he was awarded Enhanced Rate for both categories so I do have one positive story to look back on :)
I feel your pain about schools.
We moved from Oxted to Epsom in January this year. I have been researching specialist schools for my brother but failed to find one within 30 miles of my flat. I looked at local mainstream schools as well. It is the same in terms of activities too. This is a somewhat useful website with useful information on the special needs schools across all areas of Britain as well.
http://www.specialneedsuk.org

Have you had a needs assessment? If you hate your current property, then move away. We moved out of Oxted several months ago, this is one of my better decisions. The only special needs school near my old flat was very limited both in terms of availability and provision. Finally managed to secure a place at a local school for next year. Currently my brother goes to a mainstream nursery not far from the apartment. Why does it have to be so complex?
If you want to move, there's a really active campaigning group of mothers in the Oxford area, they came to our local Mencap to give us a talk. However, I've tried and failed to do what worked for them, with Hampshire. Do NOT move to Hampshire!!
BB,
I can't move to Oxfordshire - but would love to know more about what the campaigning Mums achieved.

Melly1
bowlingbun wrote:
Mon Oct 21, 2019 9:14 pm
If you want to move, there's a really active campaigning group of mothers in the Oxford area, they came to our local Mencap to give us a talk. However, I've tried and failed to do what worked for them, with Hampshire. Do NOT move to Hampshire!!
Tell me more?
Melly1 wrote:
Mon Oct 21, 2019 5:42 pm
Hi again MWC,

BB is referring to NATSPEC; https://natspec.org.uk/about-us/who-we-are/natspec/

Melly1
Hi Melly, how are you? :)

Thank you for the link - I'm currently at a point where I'd rather do his education stuff myself. I can do more with him in a morning than anyone else can in an entire day and we don't even need to get dressed if we don't want to :) What I really need is another one of me - someone who will just get on with what needs to be done, and that doesn't seem to be available where we currently live. There are various agencies and services around but they're quite specific about what they'll do and also have to be booked a month in advance which doesn't work for us as his needs fluctuate so much. It all seems unnecessarily complicated :) Nice to see you :) xx
bowlingbun wrote:
Mon Oct 21, 2019 9:14 pm
If you want to move, there's a really active campaigning group of mothers in the Oxford area, they came to our local Mencap to give us a talk. However, I've tried and failed to do what worked for them, with Hampshire. Do NOT move to Hampshire!!
Lol, Hi BB, we've moved from Hampshire, they were dreadful. Although I don't hear rosy stories about any local authority. It's the lying and the obfuscating that bothers me; I don't mind someone telling me they can't fund something because there's no money but I hate it when they try to pretend his needs aren't real. That's all I seem to have been fighting against for the last fifteen years. I'm assuming now that nowhere is going to be great so thinking more in terms of can we live in a nice area (our current place is dreadful; the man at the end of the road has huskies that start howling at 4am and then our immediate neighbours have dogs that bark for hours and I can hear them even with the doors and windows shut and the telly on. On the other side is a woman who starts her day by screaming at her kids in the car park - she doesn't seem to be able to talk in a normal voice. So at the minute just quiet would do :) ), are there good activities locally that son can engage with (doesn't have to be particularly for someone with learning disabilities, just friendly enough to let him join in is fine), is there a decent public transport system (I can't really afford to run a car but we can't really manage without one where we are at the minute so we have to). Just that sort of general stuff would do and then if I could get some payments for a carer to do things with him it would be a bonus. What are the campaigning mums campaigning for, is it better facilities or something?
thara_1910 wrote:
Mon Oct 21, 2019 6:32 pm
MumWhoCares wrote:
Mon Oct 21, 2019 5:03 pm
Hi everyone,

I've been a member for a long time but I don't post very often so I thought I would reintroduce myself before I start moaning :)

I'm a single parent to a 17 year old son who has complex needs. I have cared for him 24/7 without a break since the day he was born. I don't have a supportive family (they're so abusive I try to keep away from them as much as possible and I don't let them near my son), I had to give up work to look after him so money is always tight and I've had horrendous experiences with public sector workers over the years, to the point that I actually think I might have some sort of PTSD type thing now as I get awful physical symptoms from something as simple as asking for a prescription.

I home educated him for ten years due to the dreadful lack of suitable provision when he was younger. I had planned for him to start secondary school at the age of 11 but he went down with some sort of illness that has never been identified and was almost completely housebound for three years - we never found out why or what was going on. I then tried to get him in to a special school at age 15 with a view to him going to college at 16, only to discover that there literally wasn't a single place that wasn't over an hour's drive away. We moved to a different county to get him in to a college that we were able to live three miles away from and it has been a disaster. The Local Authority pay no attention to the SEN Code Of Practice and even after we won our appeal, they still didn't put appropriate provision in place until the second academic year, by which time his health had deteriorated severely due to the lack of support. He's now on a reduced timetable and has regressed, making the whole experience a complete waste of time.

I feel constantly that I am talking to brick walls when explaining my son's problems and how to meet his needs. His assessment information for the college is over 80 pages long and even with all of that they still don't get it and are still suggesting he does things that are just way too much for him to cope with. I have long since given up with doctors as none of them seem to understand anything beyond medication and, as he doesn't have conditions that can be cured with meds, there's really nothing they can offer.

I've been looking around at adult care and leisure facilities in the area and each thing seems to be the same. The sorts of activities they put on are of no interest to him and for some reason all the social groups we've been to have very loud music playing constantly, which drives him nuts. There's very little, it seems, that he's going to be able to do and I've already had a row with the adult services social worker when she phoned about arranging the assessment; she sounds like an arrogant idiot and I am sick and tired of dealing with people like her. My son's needs aren't difficult to meet, but people do need to be sensitive to his environment and understand that he doesn't show stress in an obvious way and his reactions are often delayed. No-one seems to be willing to listen to me and the end result is that I just feel I'm constantly working harder to put right the things that other people do wrong.

I'm contemplating moving again, nearer where we lived before so that at least we are back near friends. I've pretty much resigned myself to either looking after him myself for the rest of my days or having to hand him over to someone who will decimate his health in three months flat and neither option appeals to me!

Not really looking for advice or suggestions, in all honesty, I'm just wondering if anyone has found a way to have a life of their own whilst their loved one is well looked after by other people? I feel like Indiana Jones constantly looking for obscure treasure :) I don't need red carpet treatment, just for him to stay healthy and not be wrecked when other people get involved. Has anyone got a good experience they can share? I've met a lovely couple locally who are in their eighties and they are still having to do a lot for their disabled daughter even though she's been in a care home for twenty years and has a full care package in place. It's really got me down; I'd always assumed that eventually I wouldn't have to do this anymore but I feel now that even if he doesn't live with me I'll still have to do a lot of the work.

Sorry for all the moaning. If anyone has a good story to share I'd love to hear it :) Thanks in advance :) x

PS I feel I should end on a positive note; he switched from DLA to PIP when he was 16, the assessor was lovely and he was awarded Enhanced Rate for both categories so I do have one positive story to look back on :)
I feel your pain about schools.
We moved from Oxted to Epsom in January this year. I have been researching specialist schools for my brother but failed to find one within 30 miles of my flat. I looked at local mainstream schools as well. It is the same in terms of activities too. This is a somewhat useful website with useful information on the special needs schools across all areas of Britain as well.
http://www.specialneedsuk.org

Have you had a needs assessment? If you hate your current property, then move away. We moved out of Oxted several months ago, this is one of my better decisions. The only special needs school near my old flat was very limited both in terms of availability and provision. Finally managed to secure a place at a local school for next year. Currently my brother goes to a mainstream nursery not far from the apartment. Why does it have to be so complex?
Thanks, Thara, I'm sorry you're going through similar! Having to move because there's no provision is just appalling; we've done it a number of times now and it's a blooming nightmare, especially if it doesn't work out! We have had a needs assessment and they did offer us quite a generous package but it was all focused on someone taking him out, which he hasn't been well enough to manage. They did change it around a bit so that I could pay someone to stay in with him but, apart from the trouble I've had finding people who have experience with his particular kind of epilepsy, I also couldn't find anyone who would do less than a four hour booking and that doesn't really fit in with anything I need to do (two lots of two hours would suit me better because my own health problems now mean I get tired quickly so I work better in short bursts). So we've had money allocated that we couldn't spend whilst the education department didn't pay for support he'd been awarded via Tribunal, which is why the college placement has broken down. The whole system is just completely disgusting. I hope your brother's school goes well for him x