Home Ed pacing- autism burn out

[Ninastibbefan]

Hello all, my DD is 5 & had an autism diagnosis in the summer. She was in mainstream school & struggled all the way through reception but just about managed it. The start of year 1 was very difficult & she was becoming very stressed. After we made the decision not to force her in to school we realised she had symptoms of burn out 😞. We are thinking of home educating at least temporarily (& probably long term) as the school seems ill equipped to support her & the whole process of getting an EHCP seems a nightmare.
My instinct now she’s stopped attending school is to give her some time to unwind from the stress of school as her tolerance for activities seems to have gone right down. I’m starting to see her return to her normal self but I’m also wary of shrinking her world too much. She is an only child too so I know it’s important for her to be around other children but she struggled with the social side of school so it’s finding the right balance. Does anyone have any advice about how to approach this? I’ve read about unschooling & not so worried about the educational side but more her not becoming isolated & her tolerance to social situations reducing further.

[Vanillatablet]

Are there any SEN groups or home Ed groups locally? Does she have any interests or hobbies and could attend hobby groups?

[Ninastibbefan]

There is a forest school for home Ed/ flexi Ed kids but it’s been cancelled a few times & this morning she was put off by the rain. I’m on a fb group for home Ed children locally. She is interested in cooking so I’m trying to find a children’s cooking class. I think following her interests is a good way forward. I don’t want to put too much pressure on her but just encourage her to attend things.

[BlueBrick]

Personally I wouldn’t EHE unless you actually want to. Parents often find it easier, although not easy, to get support when DC remain in the system. Crudely, you are someone’s ‘problem’. Whereas, if you EHE it is easier for professionals to sweep DD’s needs under the carpet. However, that doesn’t mean DD has to attend school if she isn’t able to. If DD can’t attend school, the LA has a duty to ensure she receives a suitable, full-time education under s19 of the Education Act 1996. But, if you EHE the LA will state you are making suitable alternative arrangements, thereby relieving them of their duty.

Alongside this, you should still request an EHCNA. Then, if it is inappropriate for provision to be made in a school, there is EOTAS. An EOTAS package can fund far more than the vast majority of parents can afford to fund privately. That is not a criticism of parents who EHE, more a statement of what EOTAS can include.

[Ninastibbefan]

Thank you @BlueBrick. We applied for an EHCP but at the time DD was still attending school. We have updated them that she is no longer attending due to burn out but I was told our LA tends to reject EHCP requests on first application anyway. I hadn’t heard about EOTAS- that’s useful to know.
I’m torn, I’m not working currently due to a long term health condition & we are also considering a move outside London closer to my family. To be honest I am quite disillusioned in terms of our experience with the education system so far. We have been having these problems since DD started nursery at just over 1 year old. Part of me feels that it’s worth trying something different as it’s been so stressful & just feels like it’s not working. I totally get your point about the benefits of being in the system though.

[BlueBrick]

If the LA refuse to assess or issue you should appeal. The vast majority of appeals are upheld. In the meantime, if DD can’t attend the LA must ensure she receives a full-time education via alternative arrangements. 

[Ninastibbefan]

Thanks @BlueBrick, that’s so helpful. We’ll definitely appeal if they refuse on the first attempt.

[LeafDancing]

@Ninastibbefan my DD is older but there were issues from preschool and I wish we’d pulled her out of MS school earlier she’s now 12. So follow your instincts they do change a lot as you can appreciate but if she’s struggling now in our very square box education system it’s not going to get easier. However all schools are different so it maybe an alternative school May suit her needs better. My DD enjoys low level social interaction but not classes of 30+
Bluebrick has also given me some very helpful advice they know their stuff.
If you want things to look at in the meantime the £2TutionHub has some great online and recorded things to suit all age kids and not just the standard lessons. We’ve found orgami & yoga & plus usual academic lessons. Plus have a look at Live Learn Laugh Play on YouTube and website offer online stuff that’s cheaper educational. Dr Naomi Fisher has some good information in her books & website about a different way to learn.

[Ninastibbefan]

Thank you so much for responding @LeafDancing. That’s exactly how I feel, it’s like trying to fit a square peg in a round hole & it’s been going on since nursery. Like you say if anything it’s getting harder rather than easier as she goes through the education system as the demands increase & her peers develop ahead of her emotionally.
A friend suggested Naomi Fisher so I must check her out & thanks for the suggestions about resources too. How is your DD now? My DD has a very small set of people she is comfortable with (my family) & we are planning to move nearer to them all next year as we are becoming quite isolated here. I do worry about her building social relationships while home Ed but she was already withdrawing from other children at school & seems quite happy at home. Her teacher told us that she spent a lot of time at school on her own in the reading corner. I’m hoping that we will be able to build in a few more low effort social activities when she’s ready.

[LeafDancing]

Your DD is much younger than mine, she did very little if anything out of school until age 6 as she couldn’t cope with it so her social world was quite small. We didn’t start proper swim lessons until she was 6 then she raced through all the swim levels, she didn’t start piano lessons until 9yrs but loves playing now its mindfulness for her. Her very limited social world now revolve around playing Roblox online but she’s happier with a low demand environment. I would just nurture your DD how you think is best and follow her lead she will grow,

[London81]

A lot of what you've said is familiar to me but I haven't yet deregistered my son. He's also 5, in year 1 and has struggled since nursery. I suspect ASD and we're starting the referral process for assessment. But considering home ed and how it could be for us socially.

[Ninastibbefan]

Good luck @London81. We’re just in the process of deregistering now. I think when the school realised we were serious they did start pulling all of these things out of the bag that they’d never mentioned before- option of a reduced timetable, access to a quiet space, smaller group teaching. It’s too little too late though & we wouldn’t have a hope of getting DD in the vicinity of the school now. We can barely get her to leave the house! She’s doing much better now but we’ve taken the pressure off doing any arranged activities. There are a few people she is comfortable seeing, mostly family. It’s just a relief seeing her getting back to herself. Thanks @LeafDancing for your comment about being guided by her. I also found the book ‘your child is not broken’ very validating.

[imaceleb2023]

Following with interest. My four year old DD is struggling with school after thriving in the first couple of weeks and I'd never thought of burnout before. Awaiting an autism assessment. We've already been through all the other assessments, but they're making us wait six months of her being at school before observing her.

[gotomomo]

My dd was diagnosed younger, at 2, but was mainstream educated throughout, the key is to work with the school for solutions I found, dd had 1:2 (shared with a boy who was similar) at infants then 6 hours 1:1 in juniors, then a bespoke arrangement from high school onwards. Shes at university now.

Everyone is different so getting the balance can take time but homeschool really didn't help (I had to due to a house move collapsing) though academically it was simple

[Ninastibbefan]

I think that’s part of the issue @gotomomo, if we’d had the diagnosis before starting school then I don’t think we’d have chosen this school as it isn’t known for being good for SEN. The problem seems to be that in a situation like this getting support in takes ages- we’ve been accepted for an EHCP assessment but that will take months. I think if the school had worked with us more on the transition to year 1 it might be different but everything seems to take a long time to implement. I’ve just lost faith in the school now anyway- they only seemed to take notice when we told them we were not willing to force DD in to school while no provisions were being made to address the issues. We are also planning to move next year & I wouldn’t rule out another school with better provision when we do. I’m really glad your DD was able to stay in mainstream school though & is now at university.

[Ninastibbefan]

Sorry to hear that @imaceleb2023 , it’s hard to see them struggle. Just follow your instincts & don’t always trust the school- they don’t always know best I’ve found.

[BlueBrick]

Make sure the LA sticks to the EHCP timescales.

In the meantime, if DD can’t attend the LA must provide a suitable full time education, but that won’t apply if you EHE.

[Swishyfishy]

particularly with autism physical tasks can be very grounding, with a child’s busy mind and focus slowly realigning with their physical being. Id recommend very gentle child paced physical activities, cooking, gardening, nice walks, swimming, water or sand play, arts, crafts, pet care or similar for their therapeutic and value.

[Swishyfishy]

child led has been motivating for my child.

[EducatingArti]

At this age, many learning activities can be play based, for example setting up a pretend shop and adding up prices and working out change, running a pretend cafe and writing menus and taking "orders" etc.

Would she see the library "rhyme and story time" activities as being to babyish. If she likes books, maybe take her to the library at the same time these are on "coincidentally". She doesn't have to join in but she will be around other children, even if they are younger than her.

If you are not moving immediately, it might be worth investigating something like Rainbows in the new year if there isn't too much of a waiting list. If the leaders are willing for her to just observe and only join in as much as she wants to, that might work maybe?

[Ninastibbefan]

Thanks for all the suggestions everyone, much appreciated. Bit of an update which is that DD seems so much more herself after being given some time to recover from her burnout. At one point we could hardly get her downstairs but today I managed to get her to the Museum of the Home in Dalston! Gradually her confidence has been improving but we’ve been going very slowly. As some posters have suggested we’re mainly focusing on activities that motivate her & the learning that comes along with that. She enjoys cooking, being in the garden, lots of arty activities but had shown no motivation at the start of her burnout. But that’s coming back now & I think in the new year we could look at a forest school group or similar. I will also look in to Rainbows- good idea. No regrets about her stopping school though, I must say I’m glad I trusted my instincts as if we’d listened to the school poor DD would have become even more burnt out.

[L00k4m3x]

@Ninastibbefan I know this is a little old but how is your daughter now?

I suspect my son has been dealing with burnout for a little while now and it’s becoming really hard as a family for us to see/deal with.

Just like you wrote in your last update he is difficult to even get downstairs some days, he can spend hours lying in his bed on his tablet. He doesn’t like going to parks or soft plays (forgot to mention he’s also 4 but almost 5) and it’s so sad to see as he usually loves going out and having fun.

We had such a fantastic spring through to autumn last year but come January he has progressively gotten worse and worse, with signs of a burnout being obvious maybe in February. He does well at school but I don’t think he particularly enjoys it there, cries whenever he has to get ready to go etc.

Hoping your daughter got over it! 🩷

[Ninastibbefan]

Hi @L00k4m3x, so sorry to hear about your DS. It’s heartbreaking isn’t it? Does he have any reasonable adjustments at school?
I’m happy to report that my DD is doing so much better now. She’s not been in school since mid October though & I’d say it took about 3 months to see an improvement & it’s only now that I’d say she is properly thriving. She’s back to wanting to go on outings, socialise with family members & engage with her interests. We’re still not having any luck with home ed groups or tutors but I don’t think that’s a burnout thing as even before burnout she was avoiding certain activities as I think she knew she might struggle. But our home is a lot more harmonious, she has her sense of humour & confidence back. We’ve had to be very patient with her & it’s been quite frustrating at points but we’ve really scaled back on the demands on her & our commitments.

[Ninastibbefan]

We are majorly pissed off with the school as even though they were totally in the wrong about her being ‘fine’ in school they inputted to a report through the EHCP & doubled down putting all the blame on the breakdown of the school placement on us saying that we didn’t trust the school process & couldn’t tolerate our daughter’s distress. Bullshit basically. So I would say don’t trust the school too much & listen to your instincts as you know your son best. Good luck as I know how hard it is 😢.