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?

I'm so fed up of reading stuff that essentially advocates throwing kids with additional needs under the bus as acceptable collateral damage

@Mumofsend on another thread a mum of a child with asd and had a vulnerable sibling was told to suck it up and get on with it, because she was a sahm. I was furious. They have no idea. Things are so hard anyway and then this on top. We had an awful night last night dd has broken dh glasses. She was just on the rampage. Seems to be no win at the moment. Feel pretty exhausted as constantly trying to stop dd from exploding and protecting the rest of them.

@RockPaperScissorsLizardSpock73 I hate it, I really hate it.

It is always fine for SEN kids to be thrown under the bus. I remember in March I got called awful things for sending my DD in by people who have no idea .

I'm sorry things are so tough :( I find it helps to keep things really really low demand when DD is in that mood. Whatever you need to do to get through and be kind to yourself!

Yes @Mumofsend I agree. Not a shit has been given about sen kids and their families/carers since the start of this.

No demand is always the way in this house 😂😂😂
I find for me I have to find something good in each day even if it's been a complete shambles. Today has been very relaxed. Duvets and watching the birds outside. Dd is wiped out from this week.

I hope the weekend is kind to everyone x

It’s all so tricky as some ASD refuse to do work at home end need to be in school and then there are some, such as my DS and other on here really prefer being at home. It’s easier for DS as he has a full live remote timetable so the structure is still there and he can ask (often countless) questions of the teachers. Social isolation and then trying to get him back into school when it reopens are my major worries. He is of course behind his peers in social skills and I think will be even more so sat in his room for most of the day for weeks on end. Lack of exercise is also a big issue as he does lots of sport at school abs enjoys it but refuses to move at home. Remote learning to playing on his computer is what happens every afternoon.

My eldest is in school by virtue of his EHCP and is being supervised doing online lessons. He is quite happy. It’s quieter than normal and less pressure to socialise. His siblings also have EHCPs but are at home and are doing 1:1 zoom sessions.

I try and operate a “no demand” life as far as poss. I’ve spent my savings on all sorts of sensory and exercise stuff, a hot tub, more movie subscriptions and we get out of the house to the field opposite, once a day. It’s actually all quite nice!

I also divorced my husband. That made things a lot easier.

Yes getting rid of my husband was also a massive relief. I essentially had two children with additional needs and a thirty-something manchild.

I'm quite impressed with how much of DD's EHCP provision is still in place. Hopefully the gap won't widen during this lockdown!

Marking. Found my thread here... exhausting week. Dreading next week. One Asd/adhd, one undiagnosed adhd - and me with adhd.

I’ve not been able to get an EHCP for love or money despite having a private and ab nhs diagnosis.

Dd has never been a problem child at school just floats along under the radar and now in year 11, she is going to be absolutely fucked. I begged the school to take her in but she isn’t what is considered vulnerable.

I’ve got Covid along with the rest of the house and can barely get out of bed. Dd seems to have escaped and can I get her to do school work? Can I hell. She isn’t even brushing her teeth anymore. Just lies in bed.

Oh no @Ohbuggeroffcovid have you got any professionals involved still? Schools locally seem to be supportive of non-ehcp but still sen kids being in if they are asked by other professionals.

I think in an awful way my DD falling apart at school in reception has benefitted her, she only masked for 4 months and until she cracked support was non-existant.

Nope we have been referred back to camhs but the wait list is two years. I’m pulling my hair out.
I’m relieved the exams are cancelled but I know that isn’t a popular opinion.

ohbuggeroffcovid did your child get assessed? Have you spoken to IPSEA?

The school both primary and secondary have assessed her. They don’t consider her severe enough to even go down the ehcp route. There is a whole backstory that goes with it including her dad who refuses to believe there are issues - he doesn’t live with me. She doesn’t engage with assessments, it’s a bloody nightmare.

I have a four year old who has just been referred for assessment for ASD, it sounds like we are in for a long wait.

It’s very difficult to get him to join in with even the small tasks set for reception. He starts screaming ‘can’t do it’ over and over if we try to do letter tracing. Gets bored half way through the six min phonic videos and refuses to keep watching. I am grateful that I only have one child to home school (though his tank of a baby sister is also around some days!) and also that I’ve been able to take time off work. But gosh his moods are tiring.

@Ohbuggeroffcovid you can apply for ehcp yourself? That's what we did. 5 years of being told there is nothing wrong with her. It's your parenting. Well we were right school were wrong. After she was diagnosed the first thing I did was apply for ehcp as she was so far behind (even though school said no) we won. It was only last May so during the first lockdown. Since then school have suddenly admitted she is failing and very far behind. She got band 4 and is about to get 1/1 support 24/7. The only sad thing is no sen school would accept her as apparently they couldn't meet her needs but will will finish primary and explore options then. Apply yourself - don't be swayed by anyone else. Our LEA rejected our EHCP application and I appealed and won. So don't listen to anything else but your gut! Ps hope you feeling better x

@Ohbuggeroffcovid P s trying to get some professionals/schools to understand autism in girls is bloody stressful. Girls mask and will fly under the radar and there is a lot on the internet by professionals who think they should be diagnosed using disco not ados. There is the Lorna wing unit here in the UK who talk about the difficulty girls face and also Dr Tony Atwood (I think he's called) it may be worth showing this to school. Just because a child has the ability to mask their autism at school doesn't mean they are not greatly impacted by their autism - beardon said this 2016. This is what helped us immensely to break down the wall for the EHCP x

@RockPaperScissorsLizardSpock73 we have similar issues with specialist schools. None can meet her needs so she is stuck in mainstream (that also can't meet need!)

My DD school did the application, my DS i did. Both went through with no issues so its well worth applying yourself if you want to.

Already dreading tomorrow

Going ok here but only because I am just not doing any school work with my son. He’s yr 5, autistic/OCD/anxiety, just got agreement to assess for EHCP- although no idea how they will do a proper assessment in the current circumstances. Hates school, so I turned down the offered place. He’s happy at home with his Lego and a bit of drawing now and then. He’s bright and was meeting age related expectations in October despite doing no formal schoolwork between March and Sept so I’m continuing to focus on his mental health and well-being for now. I’m actually dreading schools opening to all again - we had a daily battle to get him in from Sept- Dec and I can’t see him going back again at all this time.
I am sending his twin brother in to school though - he was offered a place and I agonised over it for a while as not strictly essential (I can work from home but am lone parent) - but he does so much better with a break from his brother - he is the trigger for much of the OCD and it can be very hard for him to constantly be the target of his brother’s meltdowns. And very difficult to get NT twin to do any schoolwork at home if he sees his brother doing none. So this is best solution although I fear NT twin feels like he is being ‘sent away’ to do hard work whilst his brother lounges around at home with me....he’s been very emotional all week. It’s almost impossible to meet both their needs and hold down a full time job :-(

Dreading tomorrow too as I have to work for 3 hours out of home at the time dd should be signing in to Google classroom, she won't be signing in until Tuesday as its just not possible. Its not likely much will get done at all tomorrow meaning she will be behind a day straight away, the rest of the week will then be even harder.

Yesterday we had 3 major meltdowns. It was a family birthday and although obviously low key and we kept pretty much to a normal routine, dd2 lost it. Today, I have spent the whole time trying to keep her quiet as her sister now has live lessons all day.

Argh well dds teacher is off (indefinitely) very unheard of. We weren't aware when we got to school and total school refusal. Dread to think what this evening will be like :( something so small but so big to dd. She has formed a huge attachment to the teacher. Fingers crossed she will be ok this eve - The weekend was a car crash! Hope you lot are all doing ok xxx