Who is still sticking to the rules? How are families with disabled DC coping?

[Soonbechrimbo]

I'm curious to ask this because when I was out yesterday driving to the supermarket I saw lots of people out and about in groups. I've also seen neighbours having family over etc and also have seen people on FB posting pictures with people over.

I have a 5 year old DD with severe learning disabilities and some medical needs but is not on the shielding list. I am struggling with her care needs as well as homeschooling my other child. DH is working from home but its just all getting a bit intense now keeping DD safe and keeping everyone happy, I had a bit of a sob (in the bathroom) yesterday whilst DD was safe sat in her wheelchair for 5 mins!

Our closest family members (aunty and uncle) are the only people I trust to look after DD and have said they are desperate to see the kids and look after them to give us a break. Keeping DD 2m apart would be impossible. TBH at this point I would consider it for my sanity but my Uncle works in a hospital in a very close to patients caring role so is at higher risk of contracting the virus :/ (not a covid ward tho).

I don't know really what I'm looking for from this as I think we'll just keep going as we are as we don't know how the virus could affect DD but it's all so shit :/

School for DD is not an option (not enough staff at school or transport!).

We are still sticking to the guideline rules. We don't have a disabled child, Y4 & Y6 at home, and about a month ago the walls came caving in around me.

Now Y6 is back at school, DH back in office, life is much calmer and easier to handle.

Your sanity is important, can the auntie and uncle take your children out to the park to keep a bit of a distance or at least outside, so you could have a bath, or blitz the house, recharge somehow so you feel ready to face the world a bit fresher.

Or you go out for a solo walk whilst DH mans the kids for a hour or so in evenings or weekend when he isn't working.

@frozendaisy

We are still sticking to the guideline rules. We don't have a disabled child, Y4 & Y6 at home, and about a month ago the walls came caving in around me.

Now Y6 is back at school, DH back in office, life is much calmer and easier to handle.

Your sanity is important, can the auntie and uncle take your children out to the park to keep a bit of a distance or at least outside, so you could have a bath, or blitz the house, recharge somehow so you feel ready to face the world a bit fresher.

Or you go out for a solo walk whilst DH mans the kids for a hour or so in evenings or weekend when he isn't working.

Thank you for the reply, it feels good just to "Talk" about it. I'm glad things are feeling a bit calmer for you all.

DD's care is very hands on.. She is incontinent, needs feeding etc but she is mobile enough to get herself around the house crawling and throw herself off sofas, attack her older sibling, pull TV off the wall etc etc.. She doesn't realise what she's doing of course but is getting heavier and more difficult to manage, there is no way to socially distance whilst looking after her. She cannot walk so relatives taking her to park or watching her in garden is not an option. It's hard work carrying her up stairs and changing her nappy for weeks on end with no help except from DH of course.

I have the last couple of weeks been leaving the kids with DH after he has finished work and just hiding upstairs with a cup of tea for an hour before the kids need feeding and bathing (bathing DD is a 2 adult job). TBH I'm too knackered now to go for a walk or do anything other than lie on the bed but it's an hour to myself at least!

I would think she would fall in to the ‘vulnerable’ category so seeking support wouldn’t be against the law. It would up to you to decide the risk factors for her and the person looking after her interns of c19.
I think if you need the support/time you should take it if you can. Your life jacket first and all that.

*in terms

I attended the BLM protest but apart from that have strictly observed the rules. (And like many protestors I’m now quarantining for 14 days.)

If your aunt and uncle are providing necessary care they can do so under the guidelines.

And I would say absolutely if she is t accessing school as she can with ehcp and as vulnerable you need care provided.

I would suggest using wipes and face masks. Hand washing and gel etc.

Also them taking her for a walk in her wheelchair (or her out if she ambulance in any way).

But I would say if they do this you need to be sure they aren't mixing with another household at all.

Sorry that 3rd sentence doesn't make sense. I meant ambulant enough in any way to get out of wheelchair at a beach or park. So she can crawl around outside?

But absolutely you can have her out with carers. Even during full lockdown you could have disabled children go out as many times as needed and with carer present if required.

If your dd has an EHCP she is entitled to be in school full time as she is a vulnerable child and this has been the case since lock down began. Did you decide not to send her if not then perhaps her being in school would be best for both of you.

Thank you @velvetpeel and @itsgettingweird. I really appreciate an outsiders thoughts and suggestions. It's so hard to see the wood from the trees at the minute and don't feel able to think clearly. I'm so knackered, just strapped DD in her special chair to watch the octonaughts to stop her hurting herself whilst I have a cuppa for ten mins. Going to sleep on things tonight, just wish uncle didn't work in a hospital and this would be a much easier decision.

Rosie39 she has an EHCP and attends special school. School say they don't have enough staff to offer more than a day a week and I'm not sure how unsettling that would be for DD, I feel very let down by school - no support/phone calls from teachers etc.

I just wanted to add i have a 3 and half year old who has autism is non verbal and i have to do everything for. She is very full on and has to be watched 24/7 , i also have a 15 month old, both her SN settings have closed and went 12 weeks without any outside support , have husband. We broke rules saturday last week and my brother in law had both girls and had few hours off. It was bliss but back to reality with bump sunday. We havent planned any more break but its so hard so i empathize. Ive been looking but there is no guidlines on disabled children or carers just basically put up with it.

That's terrible get in touch with your councils SEN dept, a child with an EHCP is legally entitled to full time education it's up to the council and school to make sure they are staffed. I know it's draining to have to fight for these things (but aren't we just used to doing this for everything we need for our children) Staffing is not your problem if you want your child to be in school they have to provide it, if they don't they're breaking the law.

I empathise. 3 girls in our house - DD1 (14) is at special school. They are closed and there is no transport anyway (10 miles each way). DD2 (12) has ASD and needs me to help keep her on track with her work. DD3 (11) is doing fine. I'm exhausted!

Thanks @Duggeehugs82 it's crap isn't it. I can't find any guidelines for children either... Just for adults with disabilities who require outside care.

Thank you @rosie39forever... Thats interesting as school said they won't be able to offer full time hours in September, part time only for all children 😔. I will phone the SEN dept at the council tomorrow about it. Funnily enough I received DDs updated EHCP for this year today and got that to go over now, really can't face it at the min!!

Three primary aged DC. The younger two have Sen (one moderate needs and one has very complex needs). I’m working 20 hours a week and husband is working full time so all caring and schooling has been left to me. I’m exhausted and have hit a wall now. The nail in the coffin is that the youngest slammed a door and the glass has broken. I’m very very tired. As my youngest wakes in the night.

Sorry to hear @lougle and @lucywilde that things are tough for you all too. Its "comforting" (for want of a better word!) that we're not alone with these struggles.

Sending you virtual hugs. My youngest attends a specialist school but isn’t back in yet. Dc wouldn’t understand social distancing. My older one has an ehcp so we’re pushing for some schooling though she stressed to hell so I don’t think getting her back will be at all fun.

Thank you, same to youi! It's very tricky when they have no understanding of social distancing or hand washing etc.

@soonbechrimbo the info you've received from school is completely wrong and really weird. My dd is in a special school (non verbal autism and severe learning disability) and I have friends who have children in two other area special schools and non of us have encountered this. In fact we received communications from the schools and councils at the beginning of lock down to say that any hours we required will be met by legal requirement along with school transport.
My dds school has an excess of staff as many parents are choosing to keep their children at home voluntarily, so they are on a rolling rota going in when needed.
I would really challenge this as you sound as if you and your dd would benefit.

We're still sticking to the rules. I'm pregnant with gestational diabetes and I've been warned to take extra precautions by my midwife. Have only seen two people other than my husband and toddler (who live with me) - both friends and we walked for half an hour at a distance of 2 metres.
Toddler is still at home, not going back to nursery, and husband and I still working from home (I won't be going on mat leave for another 7 weeks).
I'm desperate to see my parents, and maybe stay with them for a few nights to get some respite. Really hope 2 household bubbles to everyone are extended soon.

I was told our council were unable to meet transport needs about 3 weeks before lockdown started because her escort was shielding. Our County had 80 routes they couldn't cover because of it. We've had contact from her SS today to say it's not safe to have children in the school for the foreseeable and it's likely that she'll be on a part time rota from September.

Our council (large midlands county) is running transport for all who need it and school has been operating key stage bubbles with the same children and staff every day and lunch served in the classroom. We are quite lucky as it's a fairly new build school with each class having their own separate outdoor space, own kitchen and toilets, so it's easy to keep children separated.

I have 2 kids with complex needs. Youngest esp so ( both tube fed, wheelchair users , ventilator user etc).
We have been in for 14 weeks now and strictly shielding ( youngest on list ).
We are coping better than I thought but the oldest one has autism and challenging behaviour which is much harder to cope with than the medical needs and personal care.
I am not looking forward to another 2 to 3 months of this though I have to say. I try just to take it one day at a time and don't think ahead too much. It helps me stay sane along with lots of cake !

I’m struggling without respite. It’s overnights in somebody’s home so not appropriate to access at the moment.

Starting 2 hours a week in their education setting next week.
It’s going to be so confusing for the. But it’s all the setting can offer at the moment. I’m having to look at it as my respite.