To wonder how we can make school work for ASD 7 year old?

[Corilee2806]

I’m at the end of my tether and really need some advice from anyone who’s been through similar.

My almost 7 year old is autistic and also very bright (she was diagnosed privately earlier this year). We moved her to a new school at the start of this term because her previous school failed to support her, she was having daily meltdowns, tummy aches, and even said earlier in the year that she wanted to die.

We hoped this new school would help her start fresh, but half a term in, nothing meaningful has been put in place.
We were told there would be an Individual Support Plan, but it still hasn’t materialised. The SENCO is nice but things are slow-moving, and everything feels inconsistent, some staff are great, others don’t seem to understand her needs at all. There’s been no formal plan, no structured emotional regulation support, and communication has been very minimal since the first week. I don’t know if I’m expecting too much. It is a small school. How long should I be giving for the different stages of ADPR (which has never been formally done in the last year of challenges - because she is academically ahead)

After a positive start, mornings are again extremely difficult - panic, tears, saying she doesn’t want to go in. Some days she hasn’t managed to go. She can be ok once she’s in the classroom (typical masking), which makes it even harder to get anyone to take it seriously. At home she’s increasingly anxious, exhausted, and losing joy in the things she used to love.

We’re at the point where I’m wondering if keeping her home for a while might be kinder. I’m worried about her mental health deteriorating again, but I’m also aware schools and attendance officers can be difficult if you withdraw temporarily.
i don’t know what to do for the best.

Feeling very alone and like no one gets it, but I just cannot see her go through what she went through earlier this year again, and I can’t see how school can work for her in the current system.

I am really trying to ignore the people trying to gaslight but hard when it’s even in my own family. But developing a thick skin pretty quickly. Yes we have the same here - academically she’s years ahead but she finds it really hard to play and socialise with peers and children her own age, much more comfortable with little ones, will only watch tv aimed at preschoolers etc. I know part of what we need to work on is developing her resilience to be able to handle these social situations in time, but right now it seems hard.

I've had to defend my approach to feeding my DD too - not ARFID but very specific in what she will eat. Had to develop a thick skin to all the 'oh I just feed my kids what we eat' (eye roll)
My advice would be to think of resilience as a very long term aim. Let your child be who she is.
I didn't know my DD was ASD until quite recently but have always had a very child centric dare I say gentle parenting approach. But the kind of gentle parenting with routines and expectations. It was inadvertently very low demand which I think was ideal for her with hindsight.
Let her play how she wants to and with who she wants to. Interests and hobbies may be 'young' for her age.
My DD was not very sociable with others and I tried to respect that (but I am quite sociable!)

Can I ask what you do in the mornings in terms of sensory and emotional regulation? Our mornings are so hard with both kids - just getting them out the door is a challenge and getting them to dress, eat, brush teeth before hand. Plus I really struggle in the mornings myself!

@Corilee2806 What I would say about resilience in particular is that your child already has to be much more resilient than most children will ever need to be because of the constant sensory and everyday challenges that she has. I think it's important to appreciate this, and understand how hard she is working and how much pressure her nervous system is under much of the time. Most NT kids do not need to show constant resilience in this way, because they are not being put under constant pressure by their environment.

At the moment I think we’re looking at flexi - full home ed feels like a big leap. I’ve joined a few home ed groups locally and the main HEFA one - it’s a lot to take in. Financially I am lucky that I can not work for a while and eventually maybe just very part time. Energy wise I worry a bit. This year I’ve realised I’m probably ND myself and also have a health condition which really limits my energy so have to take that into account. But we have resources, family support and I feel like I know people who could help us eg a friend who does maths tutoring. What else should I be thinking about? Does it work out to be expensive?

@Gair and can you tell me more about getting an Ed Psych? I’m desperate to have my daughter seen by an EP as think it will help so much with understanding how she learns but I’m told we can’t get this until the EHCP where we live - or that’s it’s not worth it, but again I’m not sure what’s true!

I have a younger son, also likely ND (on pathway) but currently doing really well in school so want to see how it goes for him. But it may get tricky when he realises his sister is at home!

Yes keeping a diary, daily now since the start of this academic year.

should we look at getting on the NHS waiting list too? We’re going private for OT. Trying right to choose for ADHD.

have stopped hearing from the school about anything. I really am at my wits end. this thread has been amazing, I thought I had researched a lot but still so much to learn. It’s overwhelming.

I did flexi initially with my similar child and then moved to full home ed, we've been home ed for 3 ish years now and honestly it's the best thing we could have done.

We stayed on the nhs waiting list for her diagnosis to be ratified. 2 years in .

Our private diagnosis was from a psychiatrist who works in NHS. He advised no point in pursuing adhd if the school didnt recognise it.

We had her assessed by EP. It cost £600 and he picked up dyslexia.

The occupational Therapy assessment picked up borderline dyspraxic and they wrote to the school about adjustments. We have done sensory workshops with OT now.

Apply for DLA. The diary will be useful.

Mornings. I am rubbish in the morning, and tbh my husband does a lot of the heavy lifting in the mornings. He is also better able physically to provide the sensory input my DC needs. That proviso aside, we do the following (has varied according to age/need).

My DC is still a reasonably early riser, so there is usually at least an hour and a half to get through the morning routine. Depending on the phase we're in we might change the order, but it's not changed willy nilly, as that would be counter productive. I would recommend thinking hard about the routine and order before getting DC started, so that you do not create a rod for your own back e.g. when younger, DC used to get up at 5am. In order to have an extra 30 mins sleep we started allowing screentime. This worked, but has been very hard to shift from having first thing on waking ever since. I know that it can make easing into the day easier, but it can also cause it's own problems down the line. So here's what we do in no particular order (but we stick to our set order):
*Screen time
*Cuddle/Squeeze
*"Chat" - this is always with me not DH (which is a problem, since DC only confides emotional stuff to me), so only happens in the am if distressed about something. Often have "chats" pm
*Breakfast
*Teeth/Hair etc - always needs prompting/reminding. We are experimenting with a programmable digital speaking clock since we don't have Alexa et al. Some people find visuals helpful, but DC forgets to look at them, even if in eyeline, so also needs a voice prompt.
*Sensory excercises e.g. throwing and catching a medicine (heavy) ball, ketchup (squashing him), bouncing on rebounder, playing catch, basketball, badminton rally etc. Obvs not all every morning, but often one or two.
*Getting dressed (if DC is dysregulated this can cause a lot of hooha, and will need considerable help to get dressed even though can do it fine when regulated). Needs prompting to keep on track.
*Shoes on is a chapter of it's own, but this is in the main a lot better now.
*Reminder to take bag (packed during evening routine previous night), water bottle, kit, coat etc.
*Small reading or maths task - this often gets dropped if DC disregulated, but we keep trying because DC benefits from the practise and overlearning
*Listening to favourite radio station (not mine😂) or Audible book during journey. DC used to cycle often to primary with DH, but new school is too far atm, but will be moving closer in the new year, so back to walking or cycling which will privide a bit more opportunity for sensory regulation through movement/weight bearing exercise.

The sensory stuff we do as a result of the assessments and input we had. We're far from getting it all right, but we at least know where to start now. It has made a massive difference to our day to day life. DC masks, so will wait until home to explode if too dysregulated during school day etc. This has improved with better understanding sensory and emotional and communication needs. Not easy, we still get stuff wrong, but a lot better than before.

I'm off to bed now, but PM if you have further questions and I will try to answer tomorrow if I have time.

@Corilee2806 , just saw your other posts to me. I will answer tomorrow as am too tired to do anymore tonight I'm afraid, but I will get back to you.

DS is now in secondary and refusing to go in (EBSA), so I don't have a magic answer, but what I learned from when he started having difficulties with school at 7/8 is -

I regret forcing him to go to school, it completely backfired on us as he ended up refusing to leave the house, and there comes a point when you can't safely force the child to go to school. We traumatised him further by doing that.

The cooperation of the school is vital. We had a lot of input from the school, the ALNCO (we're in Wales) was amazing, as was the Engagement Team when they got involved.

The right setting is key. In the end DS was able to get a place in a small unit attached to a different primary school. It was a class of 8, all with additional needs. It took a lot of work from us, but by the end of primary his attendance was over 70%, and he'd pretty much caught up academically, despite essentially having missed a whole year and his attendance still not being ideal.

Phone everybody who can possibly help or give advice. Phone them again. Phone signposting organisations, and phone who ever they suggest. You really have to do the legwork, and it's exhausting and frustrating! But then you find something that might help and it becomes worth it.

@Gair thanks so much for your replies and sorry for all the questions! That was amazingly helpful to read how you approach the mornings. I think in time both my children will need a routine like this, we are all awful morning people so will need to think about how we can change things to make this work as I really think a successful start to the day could make so much difference. Hopefully her OT assessment will give some good ideas of what will work specifically for her.

I agree with most of this, but would like to add that there are also boys that mask. Since this is such an 'unexpected' presentation, it can make it even harder to get them the support that they need.

Please also bear in mind that many children who mask can find a lot of interventions that single them out excrutiating and dysregulating - even if the do not show it on the outside. It can cause havoc when they get home and let it all out! It is often better to take a whole class approach if possible, and many of the strategies that are helpful for ND kids are also great for NT kids too! We have found that very subtly implemented adjustments have worked best so far in our masker's case.

@Corilee2806 I have PM'd you.

Thought I’d come back to this thread as it was so helpful at the end of last year. Things have moved on quite a bit - my daughter stopped going to school completely at the end of November after a particularly difficult morning - her birthday in fact - where she had initially been excited to go in then couldn’t do it. Unfortunately her teacher shouted at her and after that the trust was gone and I decided to stop the painful process of trying to force her in every morning - it was making both of us ill. She missed all the end of term Christmas fun but actually seemed happy at home and did some learning and we even went to some home ed groups.

I submitted a parental request for an EHCNA early December and it’s already been refused. I was promised to see the school’s input but still haven’t and that’s the basis on which it’s been refused, unsurprisingly- even though I suspect any input was very thin. Needless to say we’ll be appealing.

As a few people recommended we also got an OT assessment and this has been illuminating- we knew this but it confirms significant sensory processing and regulation difficulties that directly impact her ability to access learning in a busy mainstream environment without substantial, consistent adjustment. It talks about the need for a therapeutic and trauma informed approach especially given what she’s been through in school so far and the cost of masking and basically surviving every day. Lots of helpful ideas for us to try at home though and for school to put in place if she will go back.

The school is in a very reactive state currently reacting to a lot of situations in her class as I’ve mentioned before due to the high needs of the cohort. We are trying a reintegration plan but I really don’t think they’ll be able to meet her needs in the way that needs to be done consistently. Once we get to the stage of the plan where I have to leave her I think that will be it anyway - she says she is only happy to stay for 15 mins while I’m there.

So, it all feels a bit bleak really. I have no idea how long the EHCP battle will take, but I suspect we’ll have to appeal every stage so I guess over a year? In the meantime I don’t have any confidence she can thrive in mainstream. I thought maybe we could just home ed while we try and sort the EHCP and identify the right provision but I keep being advised not to do that as if the LA get any hint that’s what we’re doing they’ll wash our hands of us. But what do we do for these many months or years if she can’t go to school? Also, I’ve asked around about suitable schools in our area for her a child like her and there isn’t much.

I feel so confused and like I’m going round in circles with it all. Not to mention the despair of feeling like I’ve no prospect of working again any time soon, but at the same time all the money we’re likely to need to spend on this battle. I do understand why people decide not to fight it and home ed but feel like we need the EHCP for future options and secondary.

There is no one to talk to in real life about this. It’s too hard and complex and everyone has gradually disappeared. Whether it’s because they don’t believe me, or just don’t know what to say, I don’t know. Anyway - thought I’d try here as in the past I did get some really lovely replies. Sorry this is so long.

I strongly recommend that you do NOT remove your child from the school register. Keep them on the register so the school has responsibility for them. The fact that a reintegration plan doesn’t work is excellent evidence that the school is not a me to meet your daughter’s needs.

Have you challenged the refusal to assess?

I'm sorry things are so difficult, @Corilee2806.

Yes I think the EHCP may take a year. Mine took two!

Could you do a Subject Access Request to the school to gather data? I think there will be lots of emails..

Only got the refusal to assess on Thursday so haven’t yet but will soon. Am I right in thinking it’s best to skip mediation and go to appeal?

what do we do in the intervening years if we don’t home Ed? Yes @Needlenardlenoo i think it could be more like 2 years. I’m also told AP is really hard to get.

Yes we could try an SAR but the school is very small so not sure there will be that many emails, maybe a few. We are now in term 2 so still early days.

We’re not undertrained… there’s one of us and 30 of them!!!! We’re understaffed!!

I am a teacher (secondary).

Most of what I know about SEND, I've taught myself, normally because I need to work with a specific child. I wish I was the exception.

I had one afternoon of SEND "training" in teacher training and I don't call very broad brush stuff in INSET "training".

Hi OP, mum of a 9 year old AuDHDer here, who has stopped eating this week, too anxious to go to school. Refusal since Y1 on and off.

I spent years as a mediator in EHCP disputes. I think you may as well go straight to appeal as it sounds like the school have no evidence of trying to support your DD’s needs (assess plan do review) and LA’s like to see that support has been put in place within the notional SEND budget. Before jumping to assess.

(Tho legslly as PP said, the bar to an assessment is very low and your DD meets that criteria so the decision should be overturned.)

my question is - as a parent myself - what are you hoping the EHCP can bring ? Other than an EP assessment.
is there a provision out there that would meet your daughter’s needs? Particularly being highly academic.

I’m wondering if these schools even exist even if I could get the funding .
I hope your daughter is healing somewhat, it’s such a nightmare. X

@sweetpeaorchestra i think the main thing we want from an EHCP is legal enforceability- at the moment because my daughter masks and isn’t externalising her distress in school the way others are, she always falls to the bottom of the list for support and interventions and it becomes more of a case of ‘we’ll try our best/when we can/she can’t have that because other children already have it’ and also the fact that if she has it, it would be there til she’s an adult. Right now we can’t seem to identity suitable provision but hoping an EP would be able to say what she needs more specifically and we also hope that even though she can’t access school now things could change - but again I don’t think that would happen without the support she needs being in place consistently.

does that make sense or am I just dreaming?! And of course if there really was no suitable school which I am hopeful there is then I guess there’s EOTAS? I don’t feel like that’s where we’re headed at the moment though.

Yes it makes sense, OP. I sought an EHCP for that reason.

I think you'll be surprised how many other school and educational options there are out there when you research.