Adrienne
Well-Known Member
- Relationship to Diabetes
- Parent
Hi all
There was a bit of a discussion on the DLA thread before I went away and I didn't get the chance to respond so thought I would start a thread. I don't necessarily need replies so feel free to ignore me (some do
)
I would like to start by saying that I have never said it is harder these days for children with diabetes than in years gone by, the condition hasn't changed, just the treatments available and the knowledge. Also I would like to add that nothing I write here is written to offend anyone or cause stress or upset. I can also back up what I say re things ie schools and speak from experience of myself and daughter and some of my friends.
I think that the worries are exactly the same and will never change ie brain damage and death, how can they change !
I think that it is just very different due to progession in understanding about diabetes and technology.
There seems to be a thing about disability. Not one of us thinks our child is disabled. We all think that they can do anything, however it takes forethought and lots of planning to achieve some things and take part in some things from just going to the park to school holidays.
Schools -
Schools these days have a different outlook generally not just about diabetes. They try and cover their backs for all eventualities, this is very different from years ago. Some schools will do everything possible to make it hard for a child with diabetes to go to that school. They have to look at risk assessments for needles and general care etc. Some will not provide anyone to inject a child at lunch time which means a parent has to go into school each lunchtime. Some will not even make sure a child has a snack. I am talking children as young as 4 and 5 up to secondary schools. On a cross country run once at a secondary school, a child of 12 years old forgot to take any hypo stuff, this happens, she was only 12 so still a child. No teacher reminded her at all and someone should have been aware, the child is under the care of the school whilst at school and they have a duty of care. The child in question collapsed with no hypo awareness and it was a very bad hypo. Luckily her sister was with her but the teachers were not aware at all as they were nowhere near ! I know others who post on this forum occasionally who have horrendous stories about their schools but that is not for me to tell.
This list goes on. However there are some great schools out there who do care and they make it their business to make Every Child Matter and Every Disabled Child Matter.
Diabetes is covered under the DDA. We all agree it is not a disability like others that we know of. However it is covered and it is covered for a number of reasons ie schools being one of them. I know lots of children whose schools have tried to stop them going on day trips or longer trips due to the diabetes. This is pure discrimination and under the DDA we can do something about this. It is not the children's fault, they should not be punished for having type 1.
Due to pumps and BB (MDI) control can be much much tighter. With this tighter control comes more hypos but the highs are much less which therefore gives our children a change of less complications later in life therefore dismissing the idea that people with D can't live as long and as parents we strive to achieve longer healthy life for our children.
With this tighter control these days this means it is much more hands on care. This does not mean that parents years ago did not care any less and it does not mean they did not do everything in their power to care for their child. They worked with what technology gave them and what the doctors told them. These days its different. Its not harder, just very very different.
This isn't a competition as to who had it worse !
I find myself having to explain and justify why I test so much to someone who had T1 as a child and why I test overnight and why I claim DLA. I claim because I am allowed to. The answer should be as simple as that and should not be questioned. Why do I need to justify myself. Its because I don't want to be seen as fraudulent. I cannot work. I have to be in school three lunchtimes/afternoons a week to cover as carer. My daughter has full time one to one paid for by the PCT which is needed for her, each child is very different and has different needs. For various reasons I have to cover some of the hours. I can't work and if I didn't have DLA we would be up sh*te creek without a paddle.
I'm sure I could go on but I needed to explain that I, along with the other parents, don't think diabetes is harder these days. We all just think it is different, very very different due to the technology and knowledge there is around.
I hope that I have explained myself ok and in such a way as not to offend anyone.🙂
There was a bit of a discussion on the DLA thread before I went away and I didn't get the chance to respond so thought I would start a thread. I don't necessarily need replies so feel free to ignore me (some do
)I would like to start by saying that I have never said it is harder these days for children with diabetes than in years gone by, the condition hasn't changed, just the treatments available and the knowledge. Also I would like to add that nothing I write here is written to offend anyone or cause stress or upset. I can also back up what I say re things ie schools and speak from experience of myself and daughter and some of my friends.
I think that the worries are exactly the same and will never change ie brain damage and death, how can they change !
I think that it is just very different due to progession in understanding about diabetes and technology.
There seems to be a thing about disability. Not one of us thinks our child is disabled. We all think that they can do anything, however it takes forethought and lots of planning to achieve some things and take part in some things from just going to the park to school holidays.
Schools -
Schools these days have a different outlook generally not just about diabetes. They try and cover their backs for all eventualities, this is very different from years ago. Some schools will do everything possible to make it hard for a child with diabetes to go to that school. They have to look at risk assessments for needles and general care etc. Some will not provide anyone to inject a child at lunch time which means a parent has to go into school each lunchtime. Some will not even make sure a child has a snack. I am talking children as young as 4 and 5 up to secondary schools. On a cross country run once at a secondary school, a child of 12 years old forgot to take any hypo stuff, this happens, she was only 12 so still a child. No teacher reminded her at all and someone should have been aware, the child is under the care of the school whilst at school and they have a duty of care. The child in question collapsed with no hypo awareness and it was a very bad hypo. Luckily her sister was with her but the teachers were not aware at all as they were nowhere near ! I know others who post on this forum occasionally who have horrendous stories about their schools but that is not for me to tell.
This list goes on. However there are some great schools out there who do care and they make it their business to make Every Child Matter and Every Disabled Child Matter.
Diabetes is covered under the DDA. We all agree it is not a disability like others that we know of. However it is covered and it is covered for a number of reasons ie schools being one of them. I know lots of children whose schools have tried to stop them going on day trips or longer trips due to the diabetes. This is pure discrimination and under the DDA we can do something about this. It is not the children's fault, they should not be punished for having type 1.
Due to pumps and BB (MDI) control can be much much tighter. With this tighter control comes more hypos but the highs are much less which therefore gives our children a change of less complications later in life therefore dismissing the idea that people with D can't live as long and as parents we strive to achieve longer healthy life for our children.
With this tighter control these days this means it is much more hands on care. This does not mean that parents years ago did not care any less and it does not mean they did not do everything in their power to care for their child. They worked with what technology gave them and what the doctors told them. These days its different. Its not harder, just very very different.
This isn't a competition as to who had it worse !
I find myself having to explain and justify why I test so much to someone who had T1 as a child and why I test overnight and why I claim DLA. I claim because I am allowed to. The answer should be as simple as that and should not be questioned. Why do I need to justify myself. Its because I don't want to be seen as fraudulent. I cannot work. I have to be in school three lunchtimes/afternoons a week to cover as carer. My daughter has full time one to one paid for by the PCT which is needed for her, each child is very different and has different needs. For various reasons I have to cover some of the hours. I can't work and if I didn't have DLA we would be up sh*te creek without a paddle.
I'm sure I could go on but I needed to explain that I, along with the other parents, don't think diabetes is harder these days. We all just think it is different, very very different due to the technology and knowledge there is around.
I hope that I have explained myself ok and in such a way as not to offend anyone.🙂
