Support thread for those with children who have special needs

[Barbararara]

I was wondering if anyone else wanted to talk about trying to manage in the current situation. Maybe we could try and share ideas and give each other a bit of support.

There needs to be some clarification. I expect central hubs may pop up rather than every school having one or two children in for example.

It's also not clear as the official guidance is that those with a learning difficulty should socially distance and therefore we have closed our special needs department today however they have ECHPs. The two pieces of guidance contradict each other. I understand not everyone with an EHCP has a learning disability but what about those who fit into both groups?

I expect more guidance will come but it's up to people to make their own choices for their own families.

Please can I join in? It would be great to talk to other people in the same situation!

DS is in Y4 at a mainstream juniors with full-time 1:1. He finished active treatment for cancer about a year ago (but hasn't had chemo for a few years so we don't know if he is counted as particularly vulnerable any more). He also has HFA and a severe sensory impairment. He's very happy at school but would be equally happy staying at home (luckily). The signs of strain have already been visible in his school: he's already had 4 different (new) TAs over the last 3 days! (Luckily, he's very social and loves meeting new people, so I think he's always the one that gets the change in staff when they're short-handed - it's more people to talk to about his pet subjects .)

I can't imagine sending him in to school just because he has an EHCP! (Fortunately, both DH and I are able to work flexibly from home, so we won't have to.) I imagine that it would be very disruptive for children like him: lots of unfamiliar (and possibly untrained in SEND terms) staff, possibly a not particularly structured environment, maybe even a different building to have to navigate around, if they have to pool resources for several schools together. How is this better than being at home (apart from for children of key workers, who are already being provided for)? How can this sort of setup possibly meet the provision outlined in his EHCP? How can it possibly provide a high-quality, informed and safe learning environment for him?

It doesn't give the schools much time to organise does it ?

My son works in autistic unit attached to a mainstream primary school and they have no idea how it will work .He says staff are saying that it will be down to the local education authority to provide for the designated groups and no doubt as said above hub schools will operate .
But so many ,like my sons ,are run by an academy trust so there will have to be liasion .

And the poor kids being shuffled off to a strange school ,away from peers and their teachers . Oh dear .

Why on earth weren't schools asked to prepare an action plan for this eventuality ?

At my ds's unit this morning they said they are busy preparing homework packs in case they had to close. But thinking they may not have to now?

DS 7 is autistic and we are running so low on his food. He has a really restricted diet and loses weight so easily. I'm really worried about what I will feed him. We are in SW London all the supermarket shelves are emptied as soon as they are stocked

This is a great idea to support each other. My youngest son has autism and PDA. Routine is very important to him and I'm not look forward to not having him in school as I am unable to get him to understand what's going on. Xxxxxx

it’s been such a long and draining day. Irish schools sent home work plans today so this is our first, official day learning at home (mon and tues were school holidays) Between the challenges of adjusting to a new routine, flaring anxiety triggered by his teacher’s ott workload (he insisted on reading the email himself), anxiety about corona, missing his granny and kicking off over every piece of work he attempted...it’s been tough for all of us.

And I stupidly tried to talk about being a little bit flexible with food, as I’m struggling to get some of his staples. He interpreted this as he was going to starve to death. We’ve worked hard on trying new foods and expanding his choices over the last few years and he’s made progress, but we’re still really limited. He fussed over his (normal favourite) snack and refused point blank to eat beans on toast for lunch so I think I’ve pushed him backwards.

It’s all small stuff, and I’m so grateful to be able to bunker down, but oh! I am so drained and tired today.

This situation is so surreal.

We've just had 2 hours of meltdown and he's finally asleep. The preschool here closed on Monday night and coincided with us both having to WFH from Tuesday. I genuinely don't know how we're going to cope.

We were just gathering evidence for an EHCP ready for starting reception in September, now everything is in disarray.

Work are being wonderfully flexible at the moment, but they're also expecting this situation to last for a minimum of 4 months which feels like eternity.

Sorry, that's not really coherent, I just need to write it down somewhere.

@amz12 you have to be there when the doors open first thing in the morning. Also M&S seem to have much more on the shelves than the major supermarkets. Again get there early.

I think when they talk about keeping special schools open they are talking about residential schools where the children’s needs are so great that their parents can’t be expected to care for them 24/7, they are better off with fresh carers every 8 hours to see to their needs.

I think Non residential special schools will stay closed, these children are just as vulnerable as the over 70’s, they would be giving some a death certificate and that includes my own dc.

Expecting children with severe health problems to go to school yet keep healthy children home makes no sense to me. A lot of the TA’s at my dc’s school are near retirement age and have their own health problems, I don’t know how they can be expected to continue working. The PM should have been more specific in his speech because there is a lot of confusion surrounding this.

think when they talk about keeping special schools open they are talking about residential schools where the children’s needs are so great that their parents can’t be expected to care for them 24/7, they are better off with fresh carers every 8 hours to see to their needs

He specifically said children with EHC plan. That is every special school-most aren’t residential. I’m on a FB group now with parents of children at special school-many with significant SEMH difficulties (behaviour)-they are all breathing a sigh of relief such schools will be open.

If the PM doesn’t mean what he said-there will be some v stressed parents.

The devil is in the detail.

@fedup21 my child has severe SN and has been at a special school for nearly 11 years, I’m not breathing a sigh of relief that their school will be open, he has complex health problems, he will not be going to school, everybody knows that hygiene amongst SN kids isn’t great, I would be signing his death certificate.
Also why should the staff carry the burden of the extra responsibility in making sure the kids are cleaner than usual and enforcing social distancing. Special schools should be kept open for parents of key workers. If you can care for your child at home you should.

I've had a form from school asking me if I need childcare next week so I will reply no. I don't think the EHCP thing is compulsory.

My child has an EHCP and I contacted the school for advice. They replied that they would not be teaching children who are sent in, purely minding them with a daily changing rota of staff. Their advice is to keep children home if possible.

Thank you for the thread.

DP is his young adult son's carer. His son has ASD with anxiety and violent, challenging behaviour; he's very strong, very unhappy, and he's started ripping the house apart.

I'm so worried for both of them.

There was bugger all support for them before this pandemic. There certainly won't be now. We're terrified DSS will forcibly leave the house during an episode and get arrested.

Such tough times for everyone. I have a ds who is 5, he has ASD with learning difficulties and is in remission from acute myeloid leukaemia. His ehcp is at the decision making stage so no school for him. It’s taken a year of hard work to get him settled and happy in his mainstream school. 6 months off is going to be like starting again. I wish we could keep channels open with his TA and somehow access a few hours a week to keep him in the loop.

@amz12 what does he eat? I am SW London (sw12) and will help if I can.

@amz12 my dgc aged 4 (ASD, non-verbal) has similar food issues. For him it's cheap noodles, a very specific hotdog type, and bananas that have to be perfect. There are not available anywhere

@minipie Thank you for the offer, we are SW18 managed to find enough food for the next few days. He eats petits filous (only), rich tea, cream crackers, and asda/ sainsbury own brand brioche.

@YgritteSnow makes no difference being there as soon as the doors open, today there was a queue waiting for opening times and people were just jumping the queue and being aggressive

How is everyone getting on?
We’ve had some quite good days, but homeschool is a struggle with ds, as he just resists everything he’s asked to do so it’s like pushing boulders uphill.
But when I ease off at the weekend, that’s not right either. He’s listless and complaining of being bored.
I’ve been able to get hold of most things that he eats, but we tend to eat a lot of fresh things over a few days, then freezer/store cupboard until we can get fresh again. So he’s getting fed up of things repeating and going off them. Yesterday he decided that he won’t eat cereal anymore. That’s milk and all those fortified vitamins gone, as well as a really valuable comfort food. I’ve always tried not to be controlling about food but when you’re trying to be careful, it’s hard not to be. It’s not a good dynamic for him.

We're doing okay. I have removed most demands. DD is agreeing a timetable with me in the morning and while last week this was mostly snacks and telly, this week she has engaged with the topic sent from school (one of her favourite stories!) I'm sneaking in bits of learning that aren't workbooks, we've done LOADS of sensory play and baking, and I'm trying to teach her to pick up her own toys and put her worn clothes in the laundry basket, which is probably at least as valuable as practicing spelling 'tricky words'...

My son has autism and pda and I'm really struggling at the moment. We currently have no car to travel to anywhere, no where nice to walk where I live, I'm really finding hard to keep my son entertained never my mind my other two sons too. My husband doesn't really play with them, he said he doesn't know how? It feels like everyday I'm cooking, cleaning, playing, stopping constant arguments between my two older boys, the routine day in day out and ALWAYS being stuck in the house so hard. I am usually a very upbeat and positive person but the last 2 weeks I've had thoughts and anxiety and depression which I haven't had since I was a teen. Really need some advice???? I'm normally the back bone to the whole family as my hubby is on ADs so it always feels like it's down to me to keep everyone happy and the atmosphere cheerful and optimistic but I'm running very low on reserves. Xx