John_deedee

1
Lazy Sunday said:
Why does John not wipe Dee Dee's mouth on live.
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I noticed he put the drooling patches on one live, the fact she drools excessively whilst using the patches is a little bit concerning I think he needs to get a second opinion. And honestly if wiping her mouth does trigger seizures (???), you can get those adult ‘dribble bibs’ to help her feel more comfortable and they style them in a way that’s more dignifying/ you wouldn’t know it’s a bib as such, I used to have some custom made for my daughter and given deedee loves Disney so much I think she could get some lovely ones made. Just be more dignifying and comfortable for her.
 
I just wondered if a wet mouth might be uncomfortable for her and maybe cause a sore mouth, by watching Deedee I'm kinda learning how difficult it must be for a carer 24/7 with a child like Deedee. Do parents get any kind of help by that I mean so John could have a few days break on his own to recharge.
 
Lazy Sunday said:
I just wondered if a wet mouth might be uncomfortable for her and maybe cause a sore mouth, by watching Deedee I'm kinda learning how difficult it must be for a carer 24/7 with a child like Deedee. Do parents get any kind of help by that I mean so John could have a few days break on his own to recharge.
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Basically no.
You have to actively go out and get it if you want it. My daughter is more severely disabled than DeeDee, she is 10 and we’ve never had respite or support despite begging for it. I had a breakdown earlier last year and ended up sending an email begging for help to my local Carers centre who referred me (with my permission) to social services as a fast track, this was the only way we could obtain some respite - even then, what’s offered is basically one day in the school holidays at a centre. But it’s better than nothing!

I’d be surprised if DeeDee isn’t known to social services given her mother etc, so this is what I was a bit confused about. They like to check in that you’re doing everything to enrich and support, they’ll signpost to groups etc. It could be that now DeeDee is an adult that they’ve just signed her off. But John sincerely needs to get her into a group or activity where she’s away from him even if it’s for an hour a week, it would be so good for them both. I suspect it’s because it’s cost money… and definitely saying they can’t cater to her needs is a load of old bull.c
 
JellyWobbles said:
Basically no.
You have to actively go out and get it if you want it. My daughter is more severely disabled than DeeDee, she is 10 and we’ve never had respite or support despite begging for it. I had a breakdown earlier last year and ended up sending an email begging for help to my local Carers centre who referred me (with my permission) to social services as a fast track, this was the only way we could obtain some respite - even then, what’s offered is basically one day in the school holidays at a centre. But it’s better than nothing!

I’d be surprised if DeeDee isn’t known to social services given her mother etc, so this is what I was a bit confused about. They like to check in that you’re doing everything to enrich and support, they’ll signpost to groups etc. It could be that now DeeDee is an adult that they’ve just signed her off. But John sincerely needs to get her into a group or activity where she’s away from him even if it’s for an hour a week, it would be so good for them both. I suspect it’s because it’s cost money… and definitely saying they can’t cater to her needs is a load of old bull.c
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Jelly my heart goes out to you, I've a lot in experience caring for a sick child and how difficult it is, I was doing it single handed for a few years and it's exhausting so I fully understand you having a break down x Just to add I've never experienced a child like Deedee and her complex needs.
 
JellyWobbles said:
Basically no.
You have to actively go out and get it if you want it. My daughter is more severely disabled than DeeDee, she is 10 and we’ve never had respite or support despite begging for it. I had a breakdown earlier last year and ended up sending an email begging for help to my local Carers centre who referred me (with my permission) to social services as a fast track, this was the only way we could obtain some respite - even then, what’s offered is basically one day in the school holidays at a centre. But it’s better than nothing!

I’d be surprised if DeeDee isn’t known to social services given her mother etc, so this is what I was a bit confused about. They like to check in that you’re doing everything to enrich and support, they’ll signpost to groups etc. It could be that now DeeDee is an adult that they’ve just signed her off. But John sincerely needs to get her into a group or activity where she’s away from him even if it’s for an hour a week, it would be so good for them both. I suspect it’s because it’s cost money… and definitely saying they can’t cater to her needs is a load of old bull.c
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She will be under the 18-25 transition team, my daughter attends social care while I go to work, the social worker assessed our need as a family, the county council gave us a social care budget and we contribute monthly to that. There are many young people in her setting who have varying degrees of need/support and they are all catered for! Deedee as a young woman needs more social life than just her dads tiktok!

Lazy Sunday said:
Jelly my heart goes out to you, I've a lot in experience caring for a sick child and how difficult it is, I was doing it single handed for a few years and it's exhausting so I fully understand you having a break down x Just to add I've never experienced a child like Deedee and her complex needs.
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I echo this jelly x
 
JellyWobbles said:
Basically no.
You have to actively go out and get it if you want it. My daughter is more severely disabled than DeeDee, she is 10 and we’ve never had respite or support despite begging for it. I had a breakdown earlier last year and ended up sending an email begging for help to my local Carers centre who referred me (with my permission) to social services as a fast track, this was the only way we could obtain some respite - even then, what’s offered is basically one day in the school holidays at a centre. But it’s better than nothing!

I’d be surprised if DeeDee isn’t known to social services given her mother etc, so this is what I was a bit confused about. They like to check in that you’re doing everything to enrich and support, they’ll signpost to groups etc. It could be that now DeeDee is an adult that they’ve just signed her off. But John sincerely needs to get her into a group or activity where she’s away from him even if it’s for an hour a week, it would be so good for them both. I suspect it’s because it’s cost money… and definitely saying they can’t cater to her needs is a load of old bull.c
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I concurr.
We get 6 hours of respite care every week for our son who has additional needs.
It's paid for by the services too.
We're under the same council as John too!
 
Right now that Chris guy (that once did a live whilst he was in the bath with deedee and John) is doing a live with them.
Deedee is throwing blankets off , spitting at the camera and raising her fists at the phone and hitting john
She doesn't want to be sat on tiktok all day!!!! Also I freezing and she's in the skimpy moana boob tube and skirt.
 
What is happening
 

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