Tired of people denying my child's issues

[Springingintolife]

Just that really. Waiting on an ASD diagnosis for DD(4) and am sick of people saying things like 'she seems fine to me', 'oh but she was fine in school today'. She absolutely hates school- is non-verbal to anyone older than her, except me- but puts a smile on all day and copes with it as best as she can. Huge meltdowns as soon as we come out of the gates. She is only happy when we are just at home all day doing activities, but I don't have the energy or finances to maintain that. Holidays really calm her temper down and the abuse towards me is a lot less, but school really triggers it. So many incidences which she can't verbalise or communicate to the teachers- kids being mean to her, things being taken off her, kids saying she did something to them when it was an accident (like if she knocked into someone during a running game on the playground) and not being able to defend herself to the teacher. School refuse to give her a buddy to help her with communication. School also removed her contact book from me (after they gave it to me) on grounds of me possibly losing it and data protection etc. I was using it to speak to the teachers on my daughter's behalf. Anything which had unsettled her that day, which they could talk to her about. One example would be playing Bingo and having to rely on another child to shout 'bingo' for her when she won, but that child couldn't say it and so DD lost out on winning her prize. Came home in a complete state. There's something like that every week. Have Early Help involved at my own request, but they don't do anything to help. They just liase with school, who call them every time my daughter refuses to get ready in the mornings, and try and chase me up to get her in on time every morning. I literally can't force her to get ready unless I manhandle her and neurotypical hints and tricks which they keep suggesting don't work on my daughter. They act like I'm the issue. I'm literally on a reward chart myself it feels like, as the PSA tells me off when she's late or absent and congratulates me when she's in on time. I'm not the one who has any control over this. The other day my daughter was barricading herself in her bedroom in her pjs by lying against the door, so I couldn't get in, because she hates school that much, and all they keep saying is 'she seems fine here'. I've had six weeks of Scope support, which was nice to vent to, but not a real help in anything that really works for my daughter. School refuse to put any support in place for my daughter for her to want to be at school and just want to come down on me for attendance. She loved it for the first couple of weeks but then started being bullied by two girls and although I documented every incidence, they said they couldn't tell the girls off without seeing it themselves. Ever since then, she hasn't wanted to go to school. The girls are still generally mean to a lot of other kids (have heard other stories form other parents), but my DD has learned to just completely avoid them as much as she can.

I'm just tired of not being heard and made to feel like I'm the problem and as though DD is absolutely fine and happy. Early Help just says she can see both sides. It reminds me of a film, but I can't remember which one, where everyone is all shiny and smiley and happy and 'everything's fine', but it really isn't and something deeper going on. Feel like I'm going a bit insane.

There aren't any other schools in the area. I don't drive and I'm a single mum, so I can't homeschool, as need to find work. UC isn't enough to full time parent on every day and keep my daughter in any activities which would help her social life and learning, if I did have to homeschool.

Thanks for getting this far- just needed a rant really. And if my grammar is off, this is because this is a rant! lol.

Can you apply for an EHCP? It can come from you, it doesn't have to be the school, I think?

I feel for you op, my son is 4 and starts school in September and I'm trying to be positive (the school is literally over the road and seems very supportive with good resources) but I'm dreading it a bit. He's been going to nursery since 18 months old, 3 days a week and drop offs are still a massive issue. We swapped nurseries last year and he's improving but it's slow progress with lots of set backs after illness, holidays etc. He tells us his favourite days are "days off" or "when I know nursery is closing soon" so yeah I can't wait to get him to school 5 days a week 😬

It's so hard isn't it? I could apply for an EHCP but I wouldn't have any evidence as everyone keeps denying her having any struggles? I asked school to write in my DLA application form and they wrote how well she was doing and that she had support for communication from other children. Which isn't true- half the time DD asks children to talk for her and they won't- so she's given up trying.

They've done the ASD observation at school where she masks, because of her mutism. They refused to do anything one-to-one with her.

Even the paediatrician was mentioning to me about parents pushing for a diagnoses for their child to claim extra benefits, stipulating he didn't believe what I was telling him. When that wasn't even the case- it was her last nursery which pushed for her to have a referral- I was hesitant.

OP I feel for you so much. I’m an primary ex teacher (now home educator) and I have seen this scenario so many times where the parent (especially a single mum) is blamed for everything and gaslit over and over by school staff.

They NEVER look at the environment as the problem. They will always put it on you and your child 😞 They never take into account that the systems and structures are unsuitable for some (most) 4 year olds, especially if their is ND involved. I’m so sorry you have to endure this. It is a very stressful situation. I hate to say it but you will never ‘win’ as in you will never get them to agree that school is the problem.

Re home education, the only thing I’d say is that I know a fair few single parents doing it who somehow manage to work a job around their children. It’s not easy but there are creative ways of doing it (that obviously don’t involve an office 9-5). What is your job?

I don't have a job atm. I haven't been able to find anything which fits with school hours. Did apply for a couple which did, but didn't get them.

Sorry I didn’t read your post properly.

It’s perfectly possible to home educate on a very tight budget. You would be surprised how many free online classes, resources and home Ed groups there are. I’m only telling you this so that if you do decide school is damaging to her you have all the information you need. Please don’t assume you have to be rich to home educate. All she needs is a loving, supportive parent who can provide some interesting activities for her and for some social contact a couple of times a week. Most of the home ed kids I know aren’t doing multiple expensive extra curricular activities.

I don’t know what else to advise you with regards to school sorry. Just please don’t let them intimidate you and maybe try to keep correspondence in writing so you have a paper trail/written evidence of what they say to you. All the best OP x

She sounds very much like my autistic DD at that age but a few years on and there are greater expectations at school which means the mask slips and suddenly teachers realise exactly what you have been explaining all along.

I never really found anything to help with selective mutism as SALT seem unwilling to help when a child isn’t talking to them at all. I appreciate that this probably sounds unhelpful but for us, time really did help. It’s still there but it needs to be a particularly daunting environment to properly show.

Can you find a family support worker who is local who should understand and be able to support you. Masking, especially in girls, is incredibly normal. Experienced professionals know to look beyond this.

She has selective mutism, whether or not she is autistic. Look at SMiRA's website at selectivemutism.org.uk, there are lots of free downloadable resources and info for schools etc. Ask for a meeting with the senco and take along some handouts. There's a very active Facebook group too (look up SMiRA).

There are things the school can do to support your DD. They can use PECS https://pecs-unitedkingdom.com/store/

Or Wigit is another one.https://widgitonline.com/en/home

If DD is being assessed for ASC and is selective mute, they need to have another way for her to communicate. They can still use autism friendly strategies and make adjustments. Basically, meet the need of the child rather than the diagnosis (each autistic person being an individual in their needs). You could also use strategies at home too for DD so she has Now and Next boards for what is coming up (eg Now Bath, Next Bed or Now Breakfast, Next Brush teeth). You can also have a visual timetable for her too so she knows what is coming and in what order. They should also have a visual timetable up in the classroom so ALL children can see what is happening that day.

Keep a diary so you can log what happens each day. If they don't want a communication book then ask for a contact email you can send info to. Have you spoken to school SENCO?

From the school's POV, they can only go on what they see at school but they should be listening to you as she is masking, which is not uncommon in autistic girls.

I need to desperately find work because I can barely afford to feed and clothe me and my dd on my UC income as it is.

I really feel for you. Schools are not good at this, an awful lot of people including teachers don't understand masking in girls, and they are utterly obsessed with attendance levels (whatever the reasons for non-attendance).
A general paediatrician doesn't necessarily understand either, yours certainly doesn't.
I hope things improve for you when you have a proper diagnosis from a specialist.

I am so sorry that you are experiencing this.
My experience of schools is that unless there is behaviour issues or they aren't progressing academically then they don't want to know

Can I suggest that you write down the things that she is struggling with at school in very factual way.
As a summary of your concerns and what they have tried so far.
I would use headings that relate to autism too

eg
I am concerned about dd's selective mutism, and I think that she is on the autisitc spectrum. I recognise that school have tried several strategies, which are not working. The issues I see are:
Communication skills:

1. She struggles to communicate with adults. She does not talk to the adults in her class.

• we have tried using another child as a communicator, but they often will not speak for her, so now dd has given up asking.
• We have tried xxx which isn't working because of YYY

Social skills

1. She struggles with playing with other kids at school, eg ....

• we have tried reporting back to teachers in the morning about incidents but because she cannot speak at the time, and because the teacher has not seen the incident dd is not believed and then she becomes distressed about playtime.
• we have tried a home school comminucation book which was working, but school stopped it

and so on. The headings would be something like
struggles with transition/change
social skills
communication and language skills
repetitive behaviours
sensory issues
rigidity in behaviour and routines.
rigidity in play - does she line up toys, have fixed ways of playing, struggle to share toys with friends if they come round, play repetitively.
(eg, my dd had Sylvanians, she had a complex set of rules in her head about which animals belonged in which house etc, and if any friend put the wrong one int he wrong house, she got really upset.)
school refusing due to the stress of the school environment (give what she does, what she says and what strategies have been tried.)
meltdowns after school, related to masking in school (this is well documented and has a name, try and find it and use the name and put in the link)

I would send this to the teacher with a cc to the head and the SENCO and ask for a meeting.
I would also take it to the GP and aks them to start the process. You can do that without the school.

My dd has just received a diagnosis aged 16. I knew from when she was about 8 or 9 but she is clever and coped in school. Looking back there were dozens of little things that I didn't pick up on. Now writing them down it seems obvious.
Think hard about all the aspects of her life. Where are you providing structure so that it works? Imagine her with a different adult for the next 2 days, what wouldn't they know that she needs? Eg that she will only eat bread without butter, or that she has to have her food in separate parts of the plate, or thta she can't go to sleep without.... Are these normal age related, or are they rigidity and routines that she needs to structure herself?

Sadly we have to fight and fight hard for our kids.
If possible take someone with you to the school meeting who is not afraid of teachers. I have been to a couple with people and as soon as you start talking in a certain way, you get taken more seriously.
(eg - I agree with mum that this child has some red flags for autism, these are - then listing them as I have above)

Document EVERYTHING. If you have a conversation at the school gate, go home and write and email
Thank you for our conversation today, I am just confirming that no action is being taken about the indient dd reported because it was not witnessed by any staff.
Thank you
dd's mum

get every phone call and every relevant conversation in writing.
Keep a log of the timelines
xxxxx date I asked for yyy
zzzz date I followed up asking again for yyy
ffff date dd repeorted that xxx girl had hurt her at playtime and she was unable to communicate about it.

ask her previous nursery for a report of her issues, so that you have written evidence form another setting of your concerns

Does she get dla? If so you can be classed as her carer and no pressure to work and extra UC which might help relieve some stress

Can you apply for;

DLA
Carers allowance

And then home Ed?

I've nearly finished the forms. Tbh honest I don't have much concrete evidence about her issues as school wrote a letter for me saying 'mum says xyz about her dd'. Doubt I'd get more than the lower rate at the moment tbh.

Thank you, this is really helpful. I've also given up on asking for things or letting them know things as it all gets swept under the carpet and I'm emotionally drained from asking for six months for help for her, so I don't know what much more can be documented. If I'd known, I would have done it from the start.

All I feel I can do now, is teach DD resilience and how to deal with those upsetting incidents.

They refused to write anything for me without me leaving her in the setting and paying them £50. I took her out six months before she started school as similar issues were occurring there, with other kids taking toys off her, and they weren't taking it seriously or checking that she was okay throughout the day. Just because she played quietly on her own in the corner, they assumed she was fine.

Thank you, this is really helpful. I've also given up on asking for things or letting them know things as it all gets swept under the carpet

yes schools love to do this.
That is where your documenting comes in.
That is the point of the follow up email.
Always polite and factual - thank you for talking to me today about dd sturggling with x, Just summarising our conversation, school action is taking is - (nothing!)

This is important because

1. when they/ you finally escalate to getting support, you have all the evidence ready
2. once you start recording it, you can take 3 months of emails back to school and say - look I have raised this on all these occasions and we are still struggling with it
3. you can use it as a basis for complaint if needed.

I truly do understand how tiring it is to fight. Take a deep breath and start now recording and do go into school for every incident.

Move school. Move school. Move school.

You have my utmost sympathy OP. Utmost.

There are great schools but this isn't one of them. I think sadly, you'll need to move to a mainstream school with a decent senco to get an EHCP and probably to eventually move to a special school. I'd advise going straight to special but you'll never get in without school seeing what her needs are.

Moving schools is the only thing that's worked for my two. Much happier in the right place.

Hi are they any updates on how your child is getting on? I’m going through exactly the same thing with the school and feel so depressed.

Been where you are and I had to get very firm with the headteacher that my child was not fine. But they did eventually listen. We got an EHCP and he is now at a fantastic SEN school. Intellectually he is perfectly capable of being in mainstream but he couldn't cope with the noise, the changes the social side. He was getting really distressed.

Just wanted to say, trust your instincts and read everything on special needs jungle and IPSEA so you can advocate best for your daughter.

I believe you. This is why increasing numbers of parents of high functioning autistic children home educate.

I think having contact and support from other sen parents could help. Is there a local FB group you can join. There are also lots of mums of autistic children on Instagram. For me, watching their videos helps to know I am not alone.

Hiya, I'm sorry you're going through this as well....

My latest update is I spoke to a local charity who advised that I research the county council's expectations of schools. There's a LOT in there about how they are supposed to treat children with autistic tendencies and how those tendencies show up in school, including school refusal. Says that the child doesn't need an autism diagnosis for the school to treat them as autistic. That kinda gave me a bit of wind back in my sails. Made me realise they were wrong and I was right. I haven't produced that file of expectations in any meetings yet but I've got it incase I do need it. It's kind a like a guide book which tells schools what they HAVE to do, so they can't argue with it, in realistic terms.

I was also advised to get a letter from GP to give to school about my daughter's needs to get them to back off from me r.e. attendance. Which I did.
I went back to the GP asking for support and was referred to mental health children's nurse (not cahms, but something else), who referred to a private clinic for ADHD. They came back saying she was too young, but for now it's all more documentation for if anyone tries to argue her needs with me.

It all takes time and energy though.

I pushed senco for more support and they started doing sensory circuits with my daughter and sensory breaks. I feel like once the sensory breaks started they started taking things more seriously because it was such an obvious thing to see in plain site- I.e. if she's needing sensory then there's something going on. She still massively struggles. I still hear things from other parents about how their SEN children are treated. The buddy only lasted a day, apparently she couldn't cope with my daughter being selective mute.

I started giving her melatonin to help her sleep and it helps with the night time anger.

I'm just doing as much reliance training with my daughter as I can every day...talking through the negative things which happened and trying to give her some confidence and tools to deal with it. It's not ideal but she is getting better at brushing off some of the negativity.

I got moved onto limited capacity for work with UC and that's given me some mental space. I'm hoping to learn to drive once my income goes up (also applying for PIP and DLA for my daughter so if approved it'll be something I can afford), so I can change schools if needs be.

That's my update really...in the middle of all this I had a mental breakdown but SS wouldn't help and mental health team wouldn't help me either. They made my daughter stay with my toxic parent for two weeks whilst I slept and got my shit together. I felt a lot stronger on the other side. It's almost the end of term and DD will have a whole new teacher, less outdoor space and more challenges to face, but my income is going up and i've been signed off work search, so homeschooling or part time school may be an option.

Oh p.s. the assessment came back without an autism diagnosis as school were giving a lot of information saying DD is fine etc. But the mental health nurse who referred for ADHD said they can possibly look into the private assessment of autism also. It's something I need to speak to GP about as the clinic referred back to GP when they said she was too young for ADHD referral. I feel GP is my greatest ally in all this, as even she said it was ridiculous that the paediatricians just said no autism, then left us without support. I also sacked the early help team as they were making my mental health worse.

*thay should have said , resilience training, not reliance training. But maybe self reliance could be a good term also!