Themes:
1. Isolation
“My main fear is anything happening to my husband or myself. F wouldn’t be able to cope. There’s a lot of things he can do on his own, but equally a lot he can’t. Dealing with money. Following instructions. Filling in forms. General things you take for granted, he’d not be able to cope with. I worry about that quite a lot.”“Well, he needs more of a social life. He’s very shy and won’t initiate conversations on his own. So something to help him make friends and meet people. Something to get him out the house, he gets bored. Me and his dad are not of the same age group – so we don’t have much in common, although his dad takes him to the football once a fortnight.”
“The only thing he’s got is ENABLE Scotland, which gets him out a couple of days a week – which is not enough. S’s the kind of wean who needs to be doing something and kept active. If he’s not active he becomes frustrated and obnoxious – he can irritate and wind us all up, it’s not nice.”
“Social inclusion is very important, but if we went down the line of employment, it would happen naturally. It wouldn’t need to be an add on.”
2. Struggling with diagnosis
“I tried to get help from the school and they sent him for hearing therapy, hearing tests and speech therapy. They sent him to Knightswood Hospital so they could assess him and was there for quite a while. Eventually they said there was nothing they could really do for him. I still insisted and sent him to Drumchapel Hospital and they said the same, did all sorts of tests. ““Because we were worried about him going to secondary school and getting bullied, he was finally sent to Yorkhill Hospital when he was about 11. Finally they said he had mental coordination disorder and that there was no cure but he would learn to cope with it. He’d find it easier as he got older, which he has done”
“When he was 9 months old, we took him to the hospital and his hearing was perfect. He looked everywhere he should have looked. We said ‘There’s nothing wrong with his hearing, he’s just being ignorant’. I’ve always known he could hear, you can tell when your wean is communicating with you. You can see it in their eyes. Not what other people thought he should be doing but he’s not a normal child. He’s never going to be a normal boy or adult or whatever either”
“They told us he’d be in a wheelchair by the age of 5. He was walking, with Piedro boots. It took a lot of physiotherapy but he was walking.”
3. Navigating services
“When that finished I didn’t know what to do with F. I knew he wasn’t able for work because he’s not able to follow instructions clearly. So I tried to get help on my own and someone had mentioned to get a social worker for him.”“I think it was, more or less, ‘someone’s not in, phone back’ so I more or less gave up.”
“We did it all ourselves. Every time I applied for any support it was like hitting a brick wall.”
“When P went through primary and secondary, he did not get the support when he left school. What I remember feeling was that we, as parents, weren’t taken into consideration or included in that process.”
“Anything I was being offered for P did not suit his requirements. He was mixing with people who had bigger issues to deal with than him, being asked to join groups who were being taught basic life skills that P already had. “
Interview 1
· F is a 25 year old young man who has a learning disability and accesses our supported employment services.· L is his mum.
· G is an ENABLE Scotland Employment Coordinator.
G: Can you tell us a bit about F?
L: I found it quite difficult in the past. When he was a baby, it was a year and a half before he walked – so he was very slow in talking. For the first two years of school he was an elective mute, so me and his teacher had to assess him by writing a diary every day and passing it back and forward to his teacher. I tried to get help from the school and they sent him for hearing therapy, hearing tests and speech therapy. They sent him to Knightswood Hospital so they could assess him and was there for quite a while. Eventually they said there was nothing they could really do for him. I still insisted and sent him to Drumchapel Hospital and they said the same, did all sorts of tests.
G: What age was he?
L: He was about 8 or 9. Because we were worried about him going to secondary school and getting bullied, he was finally sent to Yorkhill Hospital when he was about 11. Finally they said he had mental coordination disorder and that there was no cure but he would learn to cope with it. He’d find it easier as he got older, which he has done. He’s not quite as shy as he used to be but he’s still shy.
G: Was he at a mainstream secondary school?
L: Uh huh. Nothing happened at secondary school at all. The first year he got seen by someone from the school , but she wasn’t much help really. He left school and went to do supported learning at Anniesland College – they sent him to St Margaret’s Hospice to do his work placement in the café. He was in the college for four years until finally he was forced to leave...
L: I found it quite difficult in the past. When he was a baby, it was a year and a half before he walked – so he was very slow in talking. For the first two years of school he was an elective mute, so me and his teacher had to assess him by writing a diary every day and passing it back and forward to his teacher. I tried to get help from the school and they sent him for hearing therapy, hearing tests and speech therapy. They sent him to Knightswood Hospital so they could assess him and was there for quite a while. Eventually they said there was nothing they could really do for him. I still insisted and sent him to Drumchapel Hospital and they said the same, did all sorts of tests.
G: What age was he?
L: He was about 8 or 9. Because we were worried about him going to secondary school and getting bullied, he was finally sent to Yorkhill Hospital when he was about 11. Finally they said he had mental coordination disorder and that there was no cure but he would learn to cope with it. He’d find it easier as he got older, which he has done. He’s not quite as shy as he used to be but he’s still shy.
G: Was he at a mainstream secondary school?
L: Uh huh. Nothing happened at secondary school at all. The first year he got seen by someone from the school , but she wasn’t much help really. He left school and went to do supported learning at Anniesland College – they sent him to St Margaret’s Hospice to do his work placement in the café. He was in the college for four years until finally he was forced to leave...
G: He wasn’t happy about leaving?
L: No, he wasn’t happy at all. He really enjoyed his college but his time had come to an end.
G: Did the college help the transition at all? Did they refer F to another service?
L: Not really, no. When that finished I didn’t know what to do with F. I knew he wasn’t able for work because he’s not able to follow instructions clearly. So I tried to get help on my own and someone had mentioned to get a social worker for him. They suggested Southbrae Centre for him and that’s where I went. He did get a social worker for a short time.
G: What age was he?
L: About 22 or 23, quite old. So they got him a social worker eventually but unfortunately that man died. Then they got him another social worker and unfortunately that lady had to leave! So that was him, yet again, without a social worker and I didn’t get another one.
G: Did they give a reason why you didn’t get one?
L: No – I can’t remember. I think it was, more or less, ‘someone’s not in, phone back’ so I more or less gave up.
G: So you decided to do it yourself?
L: Uh huh. Someone had given me leaflets about ENABLE, so that’s when I got in touch with ENABLE Scotland. They’ve been quite helpful because he’s had quite a few placements for work so far. The first was the Yoga Centre, helping out in the catering, then Templeton Business centre doing the same thing and then at Joe’s Café.
He enjoyed it – it wasn’t for the money really. He enjoyed being in the Templeton Business centre too but didn’t like the travel. Since then, ENABLE have also got him into a band project.
G: He’s well liked there – he does well, he’s a mean drummer!
L: Now we hope he’s going into Knightswood Community Centre, helping out.
G: What services do you think would be needed for F’s future?
L: Well, he needs more of a social life. He’s very shy and won’t initiate conversations on his own. So something to help him make friends and meet people. Something to get him out the house, he gets bored. Me and his dad are not of the same age group – so we don’t have much in common, although his dad takes him to the football once a fortnight.
G: If there’s no support, what would his future be like?
L He’d get more insular. F won’t initiate conversations or go up to people. Unless he gets out and is forced to meet people, he’ll just be on his own. It’ll be a lonely existence. It must be very lonely not having anyone of his own age group. My main fear is anything happening to my husband or myself. F wouldn’t be able to cope. There’s a lot of things he can do on his own, but equally a lot he can’t. Dealing with money. Following instructions. Filling in forms. General things you take for granted, he’d not be able to cope with.
I worry about that quite a lot. Although his brothers are here, they’re going to leave and do their own thing. F won’t have anyone to look after him.
· D is his dad.
· M is his mum.
· G is an ENABLE Scotland Employment Coordinator.
G: What are you experiences of services for S?
M: Right now, they aren’t very good. The only thing he’s got is ENABLE Scotland, which gets him out a couple of days a week – which is not enough. S’s the kind of wean who needs to be doing something and kept active. If he’s not active he becomes frustrated and obnoxious – he can irritate and wind us all up, it’s not nice.
G: Not a funny wind up then?
M: He thinks he’s being funny, but it’s not funny. When you’re trying your hardest to give him the best quality of life you can give him. It’s not going to benefit anybody, it’s not going to give him his place in society. Society is my biggest fear – the nature of other people.
G: He’s a very trusting guy.
M: He’s too trusting – he’d give you every penny in his wallet and not want anything in return. He’d help anybody. He’d put himself in the biggest hole if you’d let him. That’s why society is my problem – not S. People would use and abuse his trusting nature.
D: He’s just got a big heart
M: He has come a long way from that child who couldn’t walk or talk.
G: Could you describe your story, how you came to notice S needed support?
M: When he was 3 months he looked like a 3 week old baby. When he was born he was 5lbs 7 oz. We didn’t think anything of it, that he would build up. As time went on, he wasn’t getting bigger and the midwife was worried. He was quite an ignorant baby – you would talk to him, laugh and play, get him to smile and he wouldn’t do it. S got annoyed by anything around him – if there was an electronic noise, he would scream his face off! It would freak him out.
When he was 9 months old, we took him to the hospital and his hearing was perfect. He looked everywhere he should have looked. We said ‘There’s nothing wrong with his hearing, he’s just being ignorant’. I’ve always known he could hear, you can tell when your wean is communicating with you. You can see it in their eyes. Not what other people thought he should be doing but he’s not a normal child. He’s never going to be a normal boy or adult or whatever either. He went from that to not being able to walk. He didn’t know how to support his weight or body.
D: He had to have insteps in his shoes.
M: Aye, like wee stilts to try and stabilise him but he just shuffled about on his bum. He bummed about from 2 and a 1/2 till he was about 4. We went back to Yorkhill, where he got his insteps and he ended up with Piedro boots till he was about 6.
G: Let’s just talk about the hospitals because you mentioned they had told you S would be in a wheelchair...
M: Yes, they told us he’d be in a wheelchair by the age of 5. He was walking, with Piedro boots. It took a lot of physiotherapy but he was walking.
When he was 4 and a half we managed to get him to nursery, but he was still in nappies – that was an issue too.
G: Was it a mainstream nursery?
M: Yeah, it was in Partick and S went to mainstream school too...but in nursery, we had to train him every day with the potty. We found a way of doing it that was fun, he liked the films and songs so we made it fun.
G: Did you get any support?
M: A doctor in Yorkhill hospital, a local GP. S had an Occupational Therapists and a Physiotherapist, 2 or 3 times a week. I’d continue at home and brought all the equipment home – all provided by the NHS.
My GP supported S until he retired and the new GP has taken over. If it wasn’t for them, we would not have got as far as we’ve got. He was persistent in making sure S got seen by specialists. They thought S has Cystic Fibrosis, then realised it wasn’t that. They thought he had Muscular Dystrophy, they were adamant it was that – then it wasn’t that. They still don’t know today! Right know they’ve taken it to genetics and have found abnormalities in his heart and muscles.
S started mainstream school, and then the primary teachers realised they couldn’t cope with him. He was still in his Piedro boots.
D: We used to go and collect him and there’d be a problem all the time. S would have gotten frustrated. It wasn’t working in mainstream – we had to take him to a special needs school. They came and picked him up, dropped him off, all that.
G: Did things start to improve then?
M: Things did improve in terms of his learning, his acceptance. That’s a big thing for a child with any sort of needs – what’s right and what’s wrong. Seeing the bigger picture because they’re so naïve. They think they can just dive in and noone around them would get hurt. It makes us more protective – which is a bad thing.
M: He loved primary school and kept making progress. I worked a lot with the school.
D: See writing things down thought, he wasn’t interested.
M: I blame primary school for that because they gave them computers. In primary, S refused to pick a pencil up! The school never made them focus on writing – every kid should be able to do the basics. He can do it now though, through secondary school.
Between the two schools he’s come a long way but he still has a lot to develop, maturity wise. It’s going to take a few years to get him where he should be. That’s where his brother, cousins, dad, all his family who he respects and loves have a big part to play in his life.
I say to S, no matter if you make a mistake, you admit defeat, wipe yourself off and challenge it. Go again. In turn, you will succeed. Practice makes perfect. Secondary school has helped him mature. Getting him to travel independently.
G: Did the school do all that?
M: Well, me and school. It took four or five months for us to trust them – letting go of the reins is a big thing. There’s been a lot of help there - he’s sailed through secondary school. If he had a problem, I can take it to the school and talk to the headmistress. He’s sat his exams and done well. His treat was he went to Barcelona with this school, for ten days. He loved it and from there, he’s grown more.
He went to Cardonald College when he was 18 and became a young man but he wasn’t having the same physical changes as the other boys. Hair in his armpits, that kind of thing. We realised he wasn’t getting enough testosterone in his body so hospitals have enabled him to progress that way.
G: Were social work ever involved in S’s life?
M: Never. We did it all ourselves. Every time I applied for any support it was like hitting a brick wall.
· G is his mum.
· J is an ENABLE Scotland Employment Coordinator.
G: When P went through primary and secondary, he did not get the support when he left school. What I remember feeling was that we, as parents, weren’t taken into consideration or included in that process.
P seemed to be a normal wee boy, apart from his epilepsy, but had a problem with his attention. When he went into secondary school, P took more seizures, which affected his schooling quite a bit. The school gave him lots of support for English but when he left school, it seemed to fall down,
Anything I was being offered for P did not suit his requirements. He was mixing with people who had bigger issues to deal with than him, being asked to join groups who were being taught basic life skills that P already had.
My experience, even now, is that epilepsy is a void. There’s help for people who are deaf, blind or can’t work – with employment. People with epilepsy though, there’s a great big wall when employment is being looked for.
J: Did you have any positive experiences of services?
Lots of positives now – a period for about 6 years between 17 to 23, we felt a lack of support. Now it’s totally different and there appears to be lots of support. He is meeting lots of people now – ENABLE Scotland, Momentum, Epilepsy Scotland...groups that P has encountered and have helped in lots of different ways. P doesn’t have a peer group of friends because of his epilepsy, so he doesn’t have much experience with young people. These groups are letting him go into the community and make friends. Would you agree P?
P: Yeah
J: What services do you think would be useful in the future?
G: He needs support now to get the right type of voluntary work. Voluntary work that has meaning – not just a tick in the box, specifically for P so he can learn skills he will take forward into employment.
P: Maybe I could go to college as well
J: What are your goals for the future and what help would you need?
G: P, your dream would be to get a job...?
P: Yeah
J: What would it mean to have a job?
P: Reward. To earn money.
J: Does that feel like independence, and to do what everyone else is doing?
P: Definitely. I feel like I’ve giving something back to the community as well.
G: I know there’s a lot that he can give. We’re all used to working – as a family – P has seen his two young brothers working and he just wants to be similar. That is my aspiration for P.
J: How important are services for disabled people in P’s future?
It’s obviously important that there is funding for support groups – that the staff can help point P in the right direction. Social inclusion is very important, but if we went down the line of employment, it would happen naturally. It wouldn’t need to be an add on.
L: No, he wasn’t happy at all. He really enjoyed his college but his time had come to an end.
G: Did the college help the transition at all? Did they refer F to another service?
L: Not really, no. When that finished I didn’t know what to do with F. I knew he wasn’t able for work because he’s not able to follow instructions clearly. So I tried to get help on my own and someone had mentioned to get a social worker for him. They suggested Southbrae Centre for him and that’s where I went. He did get a social worker for a short time.
G: What age was he?
L: About 22 or 23, quite old. So they got him a social worker eventually but unfortunately that man died. Then they got him another social worker and unfortunately that lady had to leave! So that was him, yet again, without a social worker and I didn’t get another one.
G: Did they give a reason why you didn’t get one?
L: No – I can’t remember. I think it was, more or less, ‘someone’s not in, phone back’ so I more or less gave up.
G: So you decided to do it yourself?
L: Uh huh. Someone had given me leaflets about ENABLE, so that’s when I got in touch with ENABLE Scotland. They’ve been quite helpful because he’s had quite a few placements for work so far. The first was the Yoga Centre, helping out in the catering, then Templeton Business centre doing the same thing and then at Joe’s Café.
He enjoyed it – it wasn’t for the money really. He enjoyed being in the Templeton Business centre too but didn’t like the travel. Since then, ENABLE have also got him into a band project.
G: He’s well liked there – he does well, he’s a mean drummer!
L: Now we hope he’s going into Knightswood Community Centre, helping out.
G: What services do you think would be needed for F’s future?
L: Well, he needs more of a social life. He’s very shy and won’t initiate conversations on his own. So something to help him make friends and meet people. Something to get him out the house, he gets bored. Me and his dad are not of the same age group – so we don’t have much in common, although his dad takes him to the football once a fortnight.
G: If there’s no support, what would his future be like?
L He’d get more insular. F won’t initiate conversations or go up to people. Unless he gets out and is forced to meet people, he’ll just be on his own. It’ll be a lonely existence. It must be very lonely not having anyone of his own age group. My main fear is anything happening to my husband or myself. F wouldn’t be able to cope. There’s a lot of things he can do on his own, but equally a lot he can’t. Dealing with money. Following instructions. Filling in forms. General things you take for granted, he’d not be able to cope with.
I worry about that quite a lot. Although his brothers are here, they’re going to leave and do their own thing. F won’t have anyone to look after him.
Interview 2
· S is a 22year old young man who has a learning disability and has just left our schools service.· D is his dad.
· M is his mum.
· G is an ENABLE Scotland Employment Coordinator.
G: What are you experiences of services for S?
M: Right now, they aren’t very good. The only thing he’s got is ENABLE Scotland, which gets him out a couple of days a week – which is not enough. S’s the kind of wean who needs to be doing something and kept active. If he’s not active he becomes frustrated and obnoxious – he can irritate and wind us all up, it’s not nice.
G: Not a funny wind up then?
M: He thinks he’s being funny, but it’s not funny. When you’re trying your hardest to give him the best quality of life you can give him. It’s not going to benefit anybody, it’s not going to give him his place in society. Society is my biggest fear – the nature of other people.
G: He’s a very trusting guy.
M: He’s too trusting – he’d give you every penny in his wallet and not want anything in return. He’d help anybody. He’d put himself in the biggest hole if you’d let him. That’s why society is my problem – not S. People would use and abuse his trusting nature.
D: He’s just got a big heart
M: He has come a long way from that child who couldn’t walk or talk.
G: Could you describe your story, how you came to notice S needed support?
M: When he was 3 months he looked like a 3 week old baby. When he was born he was 5lbs 7 oz. We didn’t think anything of it, that he would build up. As time went on, he wasn’t getting bigger and the midwife was worried. He was quite an ignorant baby – you would talk to him, laugh and play, get him to smile and he wouldn’t do it. S got annoyed by anything around him – if there was an electronic noise, he would scream his face off! It would freak him out.
When he was 9 months old, we took him to the hospital and his hearing was perfect. He looked everywhere he should have looked. We said ‘There’s nothing wrong with his hearing, he’s just being ignorant’. I’ve always known he could hear, you can tell when your wean is communicating with you. You can see it in their eyes. Not what other people thought he should be doing but he’s not a normal child. He’s never going to be a normal boy or adult or whatever either. He went from that to not being able to walk. He didn’t know how to support his weight or body.
D: He had to have insteps in his shoes.
M: Aye, like wee stilts to try and stabilise him but he just shuffled about on his bum. He bummed about from 2 and a 1/2 till he was about 4. We went back to Yorkhill, where he got his insteps and he ended up with Piedro boots till he was about 6.
G: Let’s just talk about the hospitals because you mentioned they had told you S would be in a wheelchair...
M: Yes, they told us he’d be in a wheelchair by the age of 5. He was walking, with Piedro boots. It took a lot of physiotherapy but he was walking.
When he was 4 and a half we managed to get him to nursery, but he was still in nappies – that was an issue too.
G: Was it a mainstream nursery?
M: Yeah, it was in Partick and S went to mainstream school too...but in nursery, we had to train him every day with the potty. We found a way of doing it that was fun, he liked the films and songs so we made it fun.
G: Did you get any support?
M: A doctor in Yorkhill hospital, a local GP. S had an Occupational Therapists and a Physiotherapist, 2 or 3 times a week. I’d continue at home and brought all the equipment home – all provided by the NHS.
My GP supported S until he retired and the new GP has taken over. If it wasn’t for them, we would not have got as far as we’ve got. He was persistent in making sure S got seen by specialists. They thought S has Cystic Fibrosis, then realised it wasn’t that. They thought he had Muscular Dystrophy, they were adamant it was that – then it wasn’t that. They still don’t know today! Right know they’ve taken it to genetics and have found abnormalities in his heart and muscles.
S started mainstream school, and then the primary teachers realised they couldn’t cope with him. He was still in his Piedro boots.
D: We used to go and collect him and there’d be a problem all the time. S would have gotten frustrated. It wasn’t working in mainstream – we had to take him to a special needs school. They came and picked him up, dropped him off, all that.
G: Did things start to improve then?
M: Things did improve in terms of his learning, his acceptance. That’s a big thing for a child with any sort of needs – what’s right and what’s wrong. Seeing the bigger picture because they’re so naïve. They think they can just dive in and noone around them would get hurt. It makes us more protective – which is a bad thing.
M: He loved primary school and kept making progress. I worked a lot with the school.
D: See writing things down thought, he wasn’t interested.
M: I blame primary school for that because they gave them computers. In primary, S refused to pick a pencil up! The school never made them focus on writing – every kid should be able to do the basics. He can do it now though, through secondary school.
Between the two schools he’s come a long way but he still has a lot to develop, maturity wise. It’s going to take a few years to get him where he should be. That’s where his brother, cousins, dad, all his family who he respects and loves have a big part to play in his life.
I say to S, no matter if you make a mistake, you admit defeat, wipe yourself off and challenge it. Go again. In turn, you will succeed. Practice makes perfect. Secondary school has helped him mature. Getting him to travel independently.
G: Did the school do all that?
M: Well, me and school. It took four or five months for us to trust them – letting go of the reins is a big thing. There’s been a lot of help there - he’s sailed through secondary school. If he had a problem, I can take it to the school and talk to the headmistress. He’s sat his exams and done well. His treat was he went to Barcelona with this school, for ten days. He loved it and from there, he’s grown more.
He went to Cardonald College when he was 18 and became a young man but he wasn’t having the same physical changes as the other boys. Hair in his armpits, that kind of thing. We realised he wasn’t getting enough testosterone in his body so hospitals have enabled him to progress that way.
G: Were social work ever involved in S’s life?
M: Never. We did it all ourselves. Every time I applied for any support it was like hitting a brick wall.
Interview 3
· P is a 33 year old young man who has a learning disability and accesses our supported employment services.· G is his mum.
· J is an ENABLE Scotland Employment Coordinator.
G: When P went through primary and secondary, he did not get the support when he left school. What I remember feeling was that we, as parents, weren’t taken into consideration or included in that process.
P seemed to be a normal wee boy, apart from his epilepsy, but had a problem with his attention. When he went into secondary school, P took more seizures, which affected his schooling quite a bit. The school gave him lots of support for English but when he left school, it seemed to fall down,
Anything I was being offered for P did not suit his requirements. He was mixing with people who had bigger issues to deal with than him, being asked to join groups who were being taught basic life skills that P already had.
My experience, even now, is that epilepsy is a void. There’s help for people who are deaf, blind or can’t work – with employment. People with epilepsy though, there’s a great big wall when employment is being looked for.
J: Did you have any positive experiences of services?
Lots of positives now – a period for about 6 years between 17 to 23, we felt a lack of support. Now it’s totally different and there appears to be lots of support. He is meeting lots of people now – ENABLE Scotland, Momentum, Epilepsy Scotland...groups that P has encountered and have helped in lots of different ways. P doesn’t have a peer group of friends because of his epilepsy, so he doesn’t have much experience with young people. These groups are letting him go into the community and make friends. Would you agree P?
P: Yeah
J: What services do you think would be useful in the future?
G: He needs support now to get the right type of voluntary work. Voluntary work that has meaning – not just a tick in the box, specifically for P so he can learn skills he will take forward into employment.
P: Maybe I could go to college as well
J: What are your goals for the future and what help would you need?
G: P, your dream would be to get a job...?
P: Yeah
J: What would it mean to have a job?
P: Reward. To earn money.
J: Does that feel like independence, and to do what everyone else is doing?
P: Definitely. I feel like I’ve giving something back to the community as well.
G: I know there’s a lot that he can give. We’re all used to working – as a family – P has seen his two young brothers working and he just wants to be similar. That is my aspiration for P.
J: How important are services for disabled people in P’s future?
It’s obviously important that there is funding for support groups – that the staff can help point P in the right direction. Social inclusion is very important, but if we went down the line of employment, it would happen naturally. It wouldn’t need to be an add on.
