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Covid

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Original poster

Support thread for those with children who have special needs

73 replies

Barbararara · 17/03/2020 06:24

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.

OP posts:

HappyReading · 17/03/2020 06:30

Me please, this is a great idea. My DD also has health problems, I’m just hoping that it’s announced that I am to self isolate with her.

ExchangedCat · 17/03/2020 06:34

Me three. 4yo DS has ASD and we had Ann email last night to say his school is now closed indefinitely. How on earth do we handle this? I've been commenting to him about how we have to stay in and about change, but he really lives in his own world a lot of the time and this makes no sense. The visual timetable needs a lot more images

BlessedBeTheFruitCake · 17/03/2020 06:41

I'm torn between wanting my DDs school to close and not. She really struggles with the long summer holiday, 12 weeks will be awful for her. She's medically well but lots of children/teachers in her complex needs school are not. I can imagine lots of children will be off now, also if any teachers have to self isolate the ratios may be unsafe - in DDs class there's 8 students and 6 teachers.

ExchangedCat · 17/03/2020 06:53

I can't imagine schools with that kind of ratio will be able to stay open much longer under yesterday's guidance. Ours is a regular state school and it seems to be one of the first to close.

DS has really struggled getting into the routine since half term. At the end of last week things were improving. I dread to think about the effect of the next few months

DitheringDoris · 17/03/2020 06:58

My child has Down Syndrome, has had heart surgery and has asthma, SEN school has given the option to keep them home for the foreseeable. School has classes of no more than 10 and have excellent hygiene measures, I’m keeping them at school until Friday then they will be home. I don’t think they will be back at school for a long time.

There has been no guidance on children with underlying health issues or learning disabilities. This is par for the course, children with disabilities are always bottom of the pile in my experience.

BlessedBeTheFruitCake · 17/03/2020 07:14

Glad you have been given the option to keep your child at home. Hopefully they will stay well.

Original poster

Barbararara · 17/03/2020 07:17

I’m in Ireland where schools have been closed since Thursday. Ds has asd. No medical issues; my heart goes out to those of you who do.

OP posts:

ExchangedCat · 17/03/2020 07:18

Doris sounds like a sensible and supportive school. I hope your DC is ok

DICarter1 · 17/03/2020 07:27

One of my kids with asd is quite happy in her own company so a lockdown wouldn’t bother her (she’s 10). Her younger sibling also with asd (7) needs stimulation and is easily bored. Their elder sibling who is 12 is incredibly social and has no special needs will find it very difficult.

Punxsutawney · 17/03/2020 07:28

Ds is 15 and has ASD, he's in gcse year. No serious medical issues thankfully.

It's been a difficult academic year for him. He struggles to study and revise and we were already dreading the run up to the exams before all this started. At the moment school still running as normal.

Self isolation is his normal life. Given the choice he would never leave the house anyway, so that isn't much different for him. He struggles to bring school work and study into his safe home environment though so that will cause issues if school does close. If he's not in school very little revision will be going on for the exams but then we don't even know if they will happen!

PinkyU · 17/03/2020 07:30

Checking in, lo is 7 with complex developmental and health needs.

Is everyone feeling comfortable re their ability to access medication?

Elderflower14 · 17/03/2020 07:35

My ds2 has autism and is profoundly deaf. He lives alone on the other side of the country with support staff in as and when. I was meant to go down today for a meeting with his social worker. She has cancelled the meeting.
He's better off staying down there rather than coming home.. He has a good network and his friends.. He is very sad I'm not going down but I don't drive and I don't want to put my Mum at risk. She is in her 80s and lives with me.

jcoc147 · 17/03/2020 07:40

My DS8 has Asd, I really want his school to close ASAP as he is having meltdowns regularly because the teachers ands other students keep saying different things about the virus and this is worrying him. Unfortunately my work will not let me work from home unless the schools shut.
He is also a seriously fussy eater and I'm panicked about not being able to get his usual foods if everyone keeps stock piling. Currently have enough to last him a week or so.

Notonthestairs · 17/03/2020 07:46

Joining you. DD (10) has learning disabilities and ASD. In mainstream school. Just dithering about pulling her out - once we pull her out I guess we'd have to pull her NT sibling out of secondary otherwise it's pointless. I haven't slept.

Original poster

Barbararara · 17/03/2020 07:51

@jcoc147 I’m worrying about food too.

OP posts:

Laniakea · 17/03/2020 07:52

I have 3 dc at home with me - and one about to get chucked out of her home as she’s lost her job (fuck knows where she’ll sleep as dh now working from home). Dc2 is 13 with ASD & a severe eating disorder. There are 4 meals he eats (own brand shreddies & skimmed milk with a carton of Lidl apple juice. Home made bread & peanut butter (one brand), penne pasta (only that shape) & one brand of pesto, fish fingers & smiley faces).

We can’t get pasta, pesto, milk powder for bread, peanut butter, the correct type of shreddies or apple juice. If we can’t get them he literally can’t eat.

FthisS · 17/03/2020 08:00

My son is almost 13 has asd and brittle asthma. He takes 3 inhalers, montelukast, and azythromycin long term he also carries an epi pen. He takes steroids (8 for 7 days) usually twice a month. He has been home from school two weeks and won't be going back. I don't feel like anyone is taking me seriously in regards to his brittle asthma, all asthma can be serious yes but brittle asthma is severe and very different. Inhalers alone would not work for him, I'm not sleeping or eating I have a feeling of dread and I'm terrified. He is the sweetest, funniest boy, I want to keep him in a bubble.

KOKOagainandagain · 17/03/2020 08:04

DS1 (19) and DS2 (14) are autistic. Ironically, due to the whole SEN education fiasco, despite them both having f/t EHCP, DS1 ss placement failed at 14 so he has barely left the house for 5 years and DS2 goes to internet school. I am f/t carer and DH WFH. So we all already practice extreme self-isolation.

Also ironically DS1 expresses a desire to survive which means that the constant stress of expecting suicide (he has had weekly visits from mental health staff) has receded - only to be replaced by fear that me or DH or both may not survive instead.

I recommend Headspace to quell the panic.

Take care.

DitheringDoris · 17/03/2020 08:07

@Barbararara thank you for starting this thread, I think it’s going to be very supportive.
@ExchangedCat school are amazing and are on the ball about CV.
@BlessedBeTheFruitCake thank you, dc won’t be going further than the garden until it dies down. We live remotely so not an issue if self isolating. Nearest neighbour is abroad for the winter.
My child’s transport escort has just told me that SEN schools in my borough are looking to close on Friday, I hope that includes supported units that are in mainstream.

peacebypeace · 17/03/2020 08:22

@ExchangedCat

If you PM me a list of images you need I will make them and send them to you digitally (I'm a SALT).

DuchenneParent · 17/03/2020 08:27

My son has Duchenne Muscular Dystrophy, a degenerative condition. Still has normal lung function, which we want to protect, and is on long term steroids so immunocompromised.

We pulled him out of school yesterday. We are lucky in that DH is working from home at the moment anyway, I am DS's carer and DD is a toddler so doesn't need to be anywhere.

I am worried about medication, Pinky. DS takes daily steroids, we get a month at a time on repeat prescription, which I normally order and collect in person. I'm going to call them today.

I made sure to get our food deliveries booked in advance... The slots were almost all gone for the next 3 weeks around here, so I would encourage you all to do the same!

peridito · 17/03/2020 08:33

Oh peace how helpful and kind !!!

I've been thinking a lot about how this is going to affect this group and my heart absolutely goes out to you .

@Laniakea could you give more details about the own brand Shreddies ,peanut butter ,and pesto ? Maybe we can help ?

Whatsmyname26 · 17/03/2020 08:39

Autism household here and currently self isolating because my son has an awful cough and temperature. Both children and husband are autistic and husband will be working from home for the next 2 weeks. Aiming to play board games, craft and let them have a lot of screen time.

DitheringDoris · 17/03/2020 08:40

@peridito and @Laniakea I was thinking that too but I didn’t know if you were allowed to offer help on MN.
I live on the edge of a small town, our Asda is still quite well stocked bar loo roll, pasta and handwash. I’m happy to buy and post if anybody needs anything.

peridito · 17/03/2020 08:45

I think we can offer ,MN usually stresses don't over commit ,be careful of scammers etc .

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