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Parents or carers of those with special needs

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By *ittleMissCali OP   Woman
over a year ago

all loved up

How see you coping...?

Respite care is not an option in many cases... our normal outlets for destressing are closed to us.. and many are finding themselves with increasingly anxious and confused people to care for.

My daughter has some understanding but not about things like this.

So how are people coping and getting on with things .. I've been trying to keep her routine as similar as I could.

However she has no peer groups now.. not even via calls.

No social care support now

No physio. She used to go to the library every week and now cant and ia getting annoyed with me about it.

Yea she can go out and exercise more. I can still take her out to places that help her . Like the local park she would normally go to with her group as opposed to my local One.

Things she is normally looking forward to and we use as positive focus points have gone.. and I'm finding it hard to motivate her.

Not least as a carer your support has gone too. So how you managing.

And hugs ( cyber obviously) to you all

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By *ittleMissCali OP   Woman
over a year ago

all loved up

*are not see... lack of sleep typos

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By *itonmyfacebookMan
over a year ago

Burton on Trent

It's not been any different for me. Still working f/t and my son with me all the time I'm not - I'm on the last day of a stint of 4 days off ATM. As ever absolutely no support. So no change there.

The people I work with are more or less in lockdown apart from short walks. Which means I'm more or less in lockdown with my colleagues which is by far the worst part of all of this.

Good luck to you but getting a bit political: I don't think this shower of s*** are in hurry to restore any essential services.

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By *eilde HoarWoman
over a year ago

In a wax coated bubble


"How see you coping...?

Respite care is not an option in many cases... our normal outlets for destressing are closed to us.. and many are finding themselves with increasingly anxious and confused people to care for.

My daughter has some understanding but not about things like this.

So how are people coping and getting on with things .. I've been trying to keep her routine as similar as I could.

However she has no peer groups now.. not even via calls.

No social care support now

No physio. She used to go to the library every week and now cant and ia getting annoyed with me about it.

Yea she can go out and exercise more. I can still take her out to places that help her . Like the local park she would normally go to with her group as opposed to my local One.

Things she is normally looking forward to and we use as positive focus points have gone.. and I'm finding it hard to motivate her.

Not least as a carer your support has gone too. So how you managing.

And hugs ( cyber obviously) to you all"

Your library should be open soon, ours is gearing up along with the town council offices to open, all the plastic and floor signs are in. Check your library fb page x

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By *estivalMan
over a year ago

borehamwood

my daughter is autistic and nit been able to go to her group since this all started hard explaining why she cant go to an 8 yr old who copes so much better when shes in her routine.her mum is having weekly meetings with other parents on zoom while all this is going on.little un is kicking off mist days about not going to school

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By *ittleMissCali OP   Woman
over a year ago

all loved up


"How see you coping...?

Respite care is not an option in many cases... our normal outlets for destressing are closed to us.. and many are finding themselves with increasingly anxious and confused people to care for.

My daughter has some understanding but not about things like this.

So how are people coping and getting on with things .. I've been trying to keep her routine as similar as I could.

However she has no peer groups now.. not even via calls.

No social care support now

No physio. She used to go to the library every week and now cant and ia getting annoyed with me about it.

Yea she can go out and exercise more. I can still take her out to places that help her . Like the local park she would normally go to with her group as opposed to my local One.

Things she is normally looking forward to and we use as positive focus points have gone.. and I'm finding it hard to motivate her.

Not least as a carer your support has gone too. So how you managing.

And hugs ( cyber obviously) to you all

Your library should be open soon, ours is gearing up along with the town council offices to open, all the plastic and floor signs are in. Check your library fb page x"
thanks I've been checking and as yet its not planning on opening. They are running a remote service where you can drop your books off and then for some members ( those that are shielding) you can get books dropped to your door.

I'd love to just arrange to meet one of the other parents with the kids and sit on opposite sides of the park path. Its approximately 2.5m gap.. but our kids would want to hug and tend to talk with touches as well as words.

I've got her some clay coming this week. As that's what she should have been doing in art class.

And trying to arrange a online karaoke session in replacement of the once a month karaoke night at a local night club for adults with special needs. But not sure if we can do it.

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By (user no longer on site)
over a year ago

Not going to lie, it's been a struggle.... More so for me and my other kids, than him, he's not mentally old enough to actually understand, but the outbursts and violence from him has been more frequent than normal, so it's been more dangerous for my other kids, cause despite his size, he's actually very strong.... So in our house it's just surviving and trying to avoid A&E.

Although his social worker has recently given me the green light to take him to another family member who's been shielded aswell, because the only other option for respite is school, which as far as I'm concerned defeats the point, he's less exposed with a shielding family member than he is at school.... I'm struggling with this green light to break lock down rules, but if it gets any worse, I'll probably have to for all of our safety and mental health..... It's easy for people to judge others for breaking lock down, but I feel the government has let down special needs families, some of us can be just a physically abused by our SEND children, as someone in an abusive relationship

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By (user no longer on site)
over a year ago


"Not going to lie, it's been a struggle.... More so for me and my other kids, than him, he's not mentally old enough to actually understand, but the outbursts and violence from him has been more frequent than normal, so it's been more dangerous for my other kids, cause despite his size, he's actually very strong.... So in our house it's just surviving and trying to avoid A&E.

Although his social worker has recently given me the green light to take him to another family member who's been shielded aswell, because the only other option for respite is school, which as far as I'm concerned defeats the point, he's less exposed with a shielding family member than he is at school.... I'm struggling with this green light to break lock down rules, but if it gets any worse, I'll probably have to for all of our safety and mental health..... It's easy for people to judge others for breaking lock down, but I feel the government has let down special needs families, some of us can be just a physically abused by our SEND children, as someone in an abusive relationship "

Just to clarify, we also shielded due to his severe asthma. Incase anyone thinks I'd be risking a shielding family member

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By (user no longer on site)
over a year ago

Every day has been different here, getting up in a morning is a bit scary, we don't know what kind of day we face. But.... husband has been home to help so it's not been to hellish, I dread the day he has to go back to work and I have to cope alone with her. She is 6 years old, just understands no school today, her behaviour is unpredictable and nasty old habits have crept back in. It has taken her back months, it will take a lot of undoing. I'm now worried how she will cope when reintroduced to school and a "normal" life again. Stay strong momma

Take 1 day at a time, break the day up, I do breakfast to lunch, lunch to dinner, dinner to bed on bad days x

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By (user no longer on site)
over a year ago

I don't have a child with special needs but before the lockdown, I worked with adults with learning disabilities in a day care setting. The day centre is obviously shut at present, with us not knowing when it will open again. As far as I'm aware, all the families are regularly contacted by members of staff (done on rota basis for staff). I can appreciate it's not a lot, when your child had been going to day centre 5 days a week, for 7 or so hours a day. But at least it's something, it's showing the families that we did not forget about them, we're there, on the other end of the phone, if they need someone to chat with and offer ideas how to break boredom. There is also a dedicated Facebook group (private) for our service users, staff and families, to share ideas, updates etc. Again, appreciate it's not a lot, but there isn't much more we can do.

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By *itonmyfacebookMan
over a year ago

Burton on Trent


"I don't have a child with special needs but before the lockdown, I worked with adults with learning disabilities in a day care setting. The day centre is obviously shut at present, with us not knowing when it will open again. As far as I'm aware, all the families are regularly contacted by members of staff (done on rota basis for staff). I can appreciate it's not a lot, when your child had been going to day centre 5 days a week, for 7 or so hours a day. But at least it's something, it's showing the families that we did not forget about them, we're there, on the other end of the phone, if they need someone to chat with and offer ideas how to break boredom. There is also a dedicated Facebook group (private) for our service users, staff and families, to share ideas, updates etc. Again, appreciate it's not a lot, but there isn't much more we can do. "

Though about residential while the day service is shut?

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By (user no longer on site)
over a year ago


"I don't have a child with special needs but before the lockdown, I worked with adults with learning disabilities in a day care setting. The day centre is obviously shut at present, with us not knowing when it will open again. As far as I'm aware, all the families are regularly contacted by members of staff (done on rota basis for staff). I can appreciate it's not a lot, when your child had been going to day centre 5 days a week, for 7 or so hours a day. But at least it's something, it's showing the families that we did not forget about them, we're there, on the other end of the phone, if they need someone to chat with and offer ideas how to break boredom. There is also a dedicated Facebook group (private) for our service users, staff and families, to share ideas, updates etc. Again, appreciate it's not a lot, but there isn't much more we can do. "

I agree, my sons teacher has been an endless source of support to me. I'd be lost without her, she really has been amazing.

My other kids school principal has also been really great with checking in, I'm very fortunate that she is also a parent of an ASD son, and a non ASD child. So she really understands it from all angles. I really feel for support workers and teachers, they really are trying to do the best that that they can do, with very little guidance from government, all the support they have given has been off their own backs, not because they've been told to. Definitely unsung heroes in all of this

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By (user no longer on site)
over a year ago


"Though about residential while the day service is shut? "
Not sure what you mean?

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By (user no longer on site)
over a year ago

[Removed by poster at 11/05/20 17:34:45]

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