Can we have an ASD/additional needs support thread?

[Namechange8471]

I thought posting here would be best for traffic.
Impending update at 8 has me worrying about more/longer school closures and the impact on my child.

I thought we could use this thread to vent or for advice. Or achievements dc have made despite the current circumstances.

I'll go first,

Dd is 12 and autistic, 'high functioning', she was really dissapointed not to return to school.
She has made great progress since starting in September, even making new friends which is a huge deal for her.

She does well with zoom lessons, however struggles with set tasks. I have tried sitting with her however she tends to get stressed if she doesn't get something right the first time.

How is everyone's dcs coping? Any tips to help me or others?

My D.C. are 7 and 9, my daughter has GDD and my son is suspected ASD (but of course no assessment because of Covid). To be honest the key worker/vulnerable children provision here isn’t accessible for my kids - hub in a local high school with staffed by local primary teachers on a rotating basis so a different set of staff every day across a two week rota. Different setting with mostly unfamiliar adults is a recipe for disaster so they’ll be staying home with me.

ASD mum of a 10yo ASD son. He will be going in to school on a vulnerable child place. He was already losing ground before the first lockdown but when they went back it was obvious just how much more he had lost. Was also impossible to get him out of his room and do actual schoolwork.

My sleep is all over the place, all my bad habits have returned, and my autistic obsessions are in full throng to the point that I'm getting very little of any actual substance done despite having more time available than ever.

I think my mum is coping ok though, mainly because I moved out in 1991 and we've lived separately ever since. (Sorry, couldn't resist)

Thanks for this thread OP, I have a 6 yo with ASD and I suspect PDA. She really struggled in Reception as a result of lack of support and teacher insisting she was fine when she was just very good at masking. Then lockdown part 1 came and she fell off the radar just as we were beginning to push for support.

Has hardly attended Y1 since September but the expectation of trying to go in has resulted in a highly stressed and anxious child. We are meant to meet eoth an EP next week, no idea if that is happening now. Was also going to start EHCP application...

Will post more later once coffee has kicked in. Sorry there are so many of us but nice to have a safe space to chat.

Ds is 16 and has so called 'high functioning' autism. Sometimes he can barely function at all. He's currently at mainstream sixth form. He has significant anxiety and depression. They also suspect he has ARFID and he is severely underweight.

After years of being unsupported, he's just been granted an EHCP and we are now waiting for the final document. He is also meant to have a home visits from Camhs once a fortnight. Since the short lockdown in November, Camhs have only been able to visit twice and his nurse had told me previously that if there was another lockdown his visits would stop. Ds can't communicate by phone or zoom etc, so I guess his Camhs intervention won't happen whilst we are locked down.

He had an email yesterday from one of the support workers at school to say that they don't know what's happening yet. So we are waiting to hear today. I'm hoping that they may allow him into school even for a short while each week.

Thinking of all those whose children have additional needs and hoping things aren't too tough in the coming weeks.

Thanks for the thread.
I'm in Scotland and have a 13 year old with ADHD. Home learning was a nightmare last time, with him and his 10 year old brother (currently being assessed for asd).
DH and I both working and DD NT but only 7 so needs some support.
I don't know how DS1 would react if he did get a place at school but home learning just doesn't work for him. DS2 is fine if the work is structured but any barriers and he melts down.

Oh, thank you for this thread! I have a nearly 11yr old dd with ds who we are waiting a dual diagnosis of asd. Her complex needs school is only open for key workers children and "vulnerable children". I know 30 staff were not coming in due to union action before the lockdown measures were announced.

She really struggled with change of routine, it's always tougher in the holidays. Her sleep is not good, either.

It's great to see everyone reaching out, wish i could give you all a hug.

One thing I've noticed is a lot of posters mentioning routine, I'm having the same problem.

DDs class charts app is playing up, so zoom lessons are beginning with not much notice which panics her a little.

I take my hats off to the teachers, every online lesson has constited of smiley faced teachers asking how the children are and really going above and beyond to help.

DD is also not classed as a vulnerable child as she doesn't have an EHCP, she has noticed a few friends are still at school so is a little jealous i think.

DP is a train driver, I'm so jealous he gets to leave the house 😂. I'm currently pregnant so walking the dogs is my daily excitement!

Aside from the children, how are you all feeling?

Thank you so much for this thread @Namechange8471

My son is young - 3 - so he can still go to nursery thankfully. He currently goes twice a week.
We’ve just received our first draft of his EHCP and it’s better than I expected so one less thing to worry about.
I will be at home 3 days a week, as will his older sister who is usually in school. He has been refusing food since April and has lost over a stone in weight. I’ve been on the phone non stop this morning to ensure his hospital appointments and SALT will still be going ahead. SALT is thankfully but still waiting for the dietician to get back to me. It’s looking like feeding tubes :(

DS is 12 with high functioning autism.

He needs handholding through accessing his work through the most basic steps e.g. have you got a pen? No? Where might you find a pen? You don't know? There's a pen. You don't like that one? OK, where's your school bag? Have you got paper? etc.

Which would be fine, but as he really doesn't want to do it and finds it stressful he's unbearably rude to me every step.

His school are following a rigid program that follows the school timetable and it doesn't suit him at all.

Lockdown last year really suited him, he was still in primary and his teachers really didn't mind what he did as long as he was doing something so he was able to pursue his own interests.

But secondary is a step up, of course.

I'm about to go up and find out how he's got on with his second lesson. I'd happily sit and support him throughout but he's so rude to me, I'm not doing it. I know it comes from his frustrations, but equally if I let him away with being a total arse to me, he'll get used to speaking to people like that and think it's OK, won't he? I'm helping him get set up then leaving him to it.

I mean, I do have a lot of sympathy with him. He's doing poetry now, and instead of introducing the topic with a load of cool poems to catch their interest, he's having to look up the definition of a load of words to do with poetry. I'm not surprised he hates it. (Is this Gove's doing?)

But unless I'm going to pull him out of school he has to at least give it a go, doesn't he, what other choice do we have?

Progress.

I asked DS how he'd got on. He said not so well, he'd run out of time. I said we could look at them together at the end of the day and he agreed without biting my head off.

He's having a break now, back to it at 12.

I think it’s so hard to have a full timetable of remote learning. I’ve no idea what our schools offer is likely to be but I’ll have a pick and mix approach tbh, depending on how my two are coping, my work schedule and own levels of patience.

@ArtyFartyQueen I don't know. DD has a support worker come into school weekly from the Healthy Child Team & they talk about what's going on, anything DD is struggling with or upsetting her. Sometimes we get a phone call about it, often we don't, & DD doesn't really tell us much but says she finds it helpful. We asked the GP for a paediatric referral but were told it would be a long wait & then told they weren't currently doing them due to the pandemic. So currently we're in limbo but the professionals do seem to agree DD is not NT. Last lockdown & the stress of moving just beforehand (we lost our house & were in a shelter) has really affected her & she's struggling.

The school were supposed to be giving her extra support since year 1 but they basically forgot because she's quite well behaved in school, she's y4 now. Quiet & withdrawn when she struggles, probably because she can see everyone else getting on with their work, she's very sociable, friendly & eager to fit in. Has meltdowns at home though, no peer pressure here.

I took DD to the GP when she was about 4 as I've suspected ASD or similar since she was tiny. GP practically took one look at her & said no, because DD could maintain eye contact. She asked me if I was struggling or depressed though, typical.

I really don't know how to manage again. DD is a teen with severe LD and autism. I am WFH 5 days/week. Younger child at home and both primary and secondary special school shut. DD cannot learn remotely at all without my help. but with wfh this is not possible. lone parent on top .

I just had a long cry/meltdown. No social worker, no respite, no nothing.

I really thought they would keep SS open. why can nurseries stay open to support parents but not SS???

That’s a heavy load @flattyres I’m not surprised you’ve had a bit of a meltdown. I’m not going to suggest anything because I’m guessing you know what’s available (or not), but I hear how hard it is.

how are others here with kids with complex needs and EHCPs faring? are there other schools who refuse children with ehcp unless parents are key workers?

Day 1 off to a flying start, with me already being stressed out. Morning was actually ok, but trying, juggled things, but frazzled. However, DH popped home for lunch and was with the kids while I had a call with a client. Unfortunately DS had a meltdown (about something ridiculous) and DH did his usual of shouting and laying down the law. So I’m stuck in this ridiculous position of trying to cope alone while DH goes to work, but when he is here it makes life even harder. I suspect DS is worried about DH catching covid at work, but I don’t know how I’m going to do months of this

@flattyres DDs mainstream school has stated any child with an EHCP or currently being assessed for one is entitled to a school place.

@flattyres I really feel for you. Can you call and have a chat with the head and explain. Surely they must understand how you are in an impossible situation.

@flattyres - our school has offered all children with EHCPs a place.

I’ve actually just had a call from the SENCO suggesting my DS comes in as a vulnerable child as he struggled so much last time - he doesn’t have an EHCP but is on the SEN register.

I have to admit I feel a bit anxious about him going in ( single parent so do worry what would happen if I caught Covid badly and cases very high here) but know it’s the best thing for him.

Oh, flattyres, that sounds very hard. My dd(11) has severe LD too, I can't imagine being able to work as well, she's so full on.

We use PECs symbols and putting home + school on her visual timetable today, did not go down well. I let her choose a number game (she likes numbers) but that wasn't happening either. We've been for a walk and played with the teaset. We haven't been sent any remote learning yet, I think we will have some zoom sessions an email said, but I don't have the details. Last time, school was very relaxed about it, we ended up slowly building up a routine over weeks eg breakfast + walk/park + 1 activity, then next week 2 activities, and so on, as well as trying to do little and often things, such as independence skills, PECs book at meal times etc.

SendHelp, we have just had SALT intervention for eating and drinking. We ended up videoing dd at a meal time and having phone appointments. It has taken a long time, we've had issues since she was 5yrs old, but they've only just realised it's a mechanical rather than psychological issue.

send, DD is in a SS. I guess they dont want to open the floodgates to 'me too' situations so are really strikt. I do understand where they are coming from but it's still shit. Just called work but they won't entertain furlough either. guess we just have to get through this.

Hello, can I join this thread please?

I've just been told my son is eligible for a place at school which surprised me as he doesn't have an EHCP but does have SEN ('high functioning' ASD and ADHD). Last lockdown we weren't offered a place but he's moved from the infant school to juniors, and they seem much better.

I'm just debating whether it's the right thing to accept the place. I'm working but his dad is furloughed, for now at least, and is happy to attempt home ed, but it was a struggle last time and I can see a big benefit to DS in being in the school setting. DS' SEN are quite significant and I'm worried about the effect of lots of time out, but he's not at the most severe end of the scale in terms of needs. And I'm aware lots of other parents are struggling on, so part of me feels guilty. I think we could manage if it really is just these 6 weeks but I imagine it's likely to go on longer. OTOH obviously keeping numbers low in schools is important so am I doing the wrong thing sending him in, even if it's the best thing for him?

Sorry to ramble - I'm probably overthinking.