I feel so sad

[Skipsseventyseven]

I can't believe I'm posting this on here as I'm not usually one to do this but I feel so sad 😭😭. I'm really concerned about my daughter. We are home educating due to her being too anxious tp be st school and I am constantly treading on egg shells. She's very intense doesn't #want to do anything and I'm trying so hard to get her socialised again but she's so resistent every time I try and help her. She refuses to talk to anyone other than me. I've booked her doctors appointments and she doesn't go. We had a CAHMs appointment and she refused to talk to them. They offered her animal therapy which I thought she would love but she says no to that now too. I'm worried when I write my report to LA they will just say she has to go to school and then she won't go and we will be back at square 1. I work full time in a managerial role but I can't step down or go part time as I have a large mortgage and lots of debt. I feel like I just want these years to be over which makes me feel like a horrible person because I love her dearly. Please be kind. I'm writing this because I feel like I am all on my own and I just want to hear your stories so that I know I am not alone and that there are others who are going through the same. She's gotten aggressive and violent a few times too but that does seem to be getting better. I have massive bruise on my foot because she threw a chair down earlier and it landed on my foot. She doesn't reallybxare though. I'm makinf her sound awful but she really does have a kind heart when she is not triggered. When she was at school tgeybsaid she was a model pupil. She refuses to stay at her Dads now but when she did he didnt see this behaviour which makes me feel more rubbish. She says she can only be herself with me but it's exhuasting 😢

I'm really sorry to hear this and very much can relate. I despair with CAMSH because people who truly need help are usually not the ones who are super eager and able to engage, at the drop of a hat, and CAMSH should have a duty to persevere and expect initial resistance and avoidance as par of the course. Could you find a private therapist? Ideally someone who can come to your home? It should be someone who works face to face and includes you and your daughter's father, if you are on speaking terms. 20 hours would be an investment of about 1.5k. I know that's an awful lot, but with the right therapist it could help a lot and make you feel less alone - a good therapist should help you as much as your daughter. Do you receive DLA, if so, could you use part of the money for therapy? If not, you should apply for DLA asap. One observation I'd make is that if she says 'I can only be myself with you'. What does this mean? It sounds to us parents like something we need to protect and cherish, doesn't it? Despite it being terribly exhausting, it pulls at our heart strings and makes us want to keep protecting our children. But we also need to think whether this is actually a true statement. Because when your daughter is home with you because she is afraid of everything else, is she then her 'true self?" With my daughter, I visualise it as her true self having been highjacked and controlled by anxiety. It's the anxiety talking, almost like a demon possessing her, as the anxiety doesn't want to get challenged by me or anyone else. It's the anxiety trying to make me its ally. My hunch is that if you want your old daughter back, you can't allow her to be 'her current self', as her current self, who is afraid to see her friends, unable to enjoy things and unable to grow, is not her true self. A therapist will be able to guide you, as in how to support and accomodate her true needs, and at the same time challenge her and so give her opportunities to learn to manage and limit her crippling anxiety. It's so hard as they do need to engage, but a way to get there is by understanding the difference between her true needs and the demands of the anxiety disorder. The anxiety disorder grows stronger if you accommodate the demands of the disorder. At the same time, if you accommodate and support true needs, (which might be different from 'normal' girls due to neurodiversity, so I would want to pursue an assessment to get a better picture of her genuine needs and how they can be met, and an EHCP to ensure that these needs are met - if home is a good place for her to study, an EHCP could include online schooling or tutors, but would also e.g. state support needed for GCSEs in exam centres etc, therapeutical help or clubs etc), your daughter will get stronger to manage anxiety, but it's often not easy to see what is what, and true needs and anxiety's demands can be intervined, and you'll also need support to weather the wrath of the threatened anxiety demon, so you'll need to team up with a therapist, and ideally her father or any other relative or partner if there is, as staying calm, relaxed, optimistic and firm throughout can be the greatest challenge. It's horrible and there is no easy fix, but I do see a positive, slow and steady, developmentment with my children and also with our my own capacity as a parent to deal with it. Managing anxiety and conflict is something I and my husband still have to learn and get better at. It's a vicious cycle, our children soak up and internalise our anxiety and conflict, and we then absorb and get triggered by their anxiety and distress. At the same time, there is the genetic element, so anxious children with difficulties to regulate emotions and high sensitivity will almost certainly have parents with the same genes, so it's super hard for the whole family. Genes are strong, so there is no easy fix, and noone is to blame for having done anything to cause it or being to weak. Noone would blame someone born blind. It's factually a huge challenge to learn new skills to compensate for the difficulties one has, and at the same time to discover the special strength that come with each condition. I'm sure your daughter has great strengths and interests. Tapping into them usually works best. If e.g. she likes animals, spending time with animals would be good. You don't need to call it therapy. You could maybe offer to look after a friend's dog over the weekend and first get her to spend time with the dog and bond with him and you could then persuade her to come and walk the dog with you. You properly have to be a bit firm and pull at her heartstrings to get her to do it, maybe say something like: 'The dog needs us. I know you too well as to believe you would like to see the dog suffer. You are in control of where we are going, and for how far - to the x or the y, where it's quiet or where there is z you like, but look at Fluffy, how eager he is for his walk. Can you say No to Fluffy?'

How well does DD’s DF understand ASD? DD thinking she can only be herself (aka not masking) with you suggests DF doesn’t understand ASD as well as he might. Is he willing to learn more about ASD and DD's presentation?

How old is DD?

What are her interests?

Other than animal therapy, what else has been tried?

Has DD had SALT and OT assessments?

Have you had social care assessments? A carer’s assessment for you and an assessment of DD’s needs?

Who looks after DD whilst you work?

Have you considered requesting an EHCNA? Personal budgets for elective home education are incredibly rare. Where they are given, they are often limited. However, if you no longer wish to continue to EHE, there are other possibilities even DD can’t attend a school. EOTAS/EOTIS is possible if it is inappropriate for provision to be made in a school. The benefit of an EHCP is it can fund provision, including therapeutic provision, in excess of what most parents can afford to fund themselves.

Thanks both,
Daughter is currently goung through an autism assessment. We did have had early help but they said we know what we are doing and don't need them.
I work mostly from home but do need to be at my desk although obviously im not all the time. Husband works from home on the day I'm in the office.

Daughter is 13. Sometimes she is lovely but she gets very angry if there is a change, if I ask her to do anything or when she is anxious.

I've tried parenting courses. I'm not sure about a therapist purely because she would refuse to engage.

Today we've had an ok day. I think she does mask everywhere else except with me. I have quite a good relationship with her dad but he can get quite defnaive and cross with her when she doesn't want to go and throws his toys out of the pram saying he's not going to bother making contact with her etx because she doesn't bother with him. I have to remind him that she is 13 and most likely neuro diverse and it's up to us to keep encouraging her. My husband had no patience either and I've told him not to get involved because he starts shouting and makes things worsebas this causes her behaviour to be even worse. I've learnt ro choose my battles and try and be calm but it's so exhausting.

Request social care assessments. On their website, Contact has model letters you can use. It isn’t about knowing what you are doing.

I think DD needs more input during the day. I don’t think it is feasible to leave her to her own devices whilst you and DH are working all week. She is showing you this isn’t working for her.

Have you tried PDA strategies?

Some people find the books The Explosive Child and the Out of Sync Child helpful.

Rather than traditional therapy, have you looked at something that taps into DD’s interests e.g. animal assisted therapy or Mindjam? What are DD’s interests? What does she do during the day. This is often the way in.

We are looking into animal therapy currently. We are home she isn't left to her own devices - I set her work and regularly go in her room throughout the day and we also go through her work. Luckily my manager is undestanding and I make up whatever time I need to in the evening but this isn't ideal

She refused to go to school so really I have been forced into home educating. I was setting her work that the school could not do so I was just setting the work for her but I figured since I'm already doing this we may as well do it minus the phone calls. Not really sure what social cares role would be what we really need is help to get her through a autism assessment.
since she has been home educated though she is more resistant and I do agree home education is not whats best for her but its hard when she refuses and is resistant.

We have looked at scholols together as she hated her old school and there is one she said she would quite like to go to but they haven't got spaces so I'm appealing (I asked her if she would like me ti appeal or sit pn the waiting list I'm trying to give her some control). I think of this carries on I'm going to try and look at alternaticve provisions such as a technical college and colleges that are for 14- 16 year olds

You may be at home but DD is showing you she needs more input day to day than you/DH can give whilst working full time. It isn’t necessarily about academics. Even if DD couldn’t manage independent work during work hours, it can be covered outside of your work time. It is about the social and emotional side of things. DD is showing you she needs more support during the day with that.

If you no longer wish to EHE, there are other options if DD can’t attend school. You can inform the LA you are no longer EHEing and request provision under section 19 of the Education Act 1996. Alongside that, you can request an EHCNA and ultimately pursue an EOTAS/EOTIS package via an EHCP.

Social care assessment can be about supporting DD and you. There is more information on Contact’s website if you want to read more about the LA’s duties. An ASD diagnosis isn’t going to suddenly change things; support is based on needs, not diagnosis.

For an ASD diagnosis, you can try the Right to Choose pathway (you can look for providers and their waiting times online and ask your GP to refer you), which might be quicker. But the previous poster is right, that a diagnosis unfortunstely doesn't come with any automatic support. It feels pretty frustrating getting the diagnostic report which lists all the support needs the child has and none of them are followed up on by the NHS. It is helpful though to understand everyone needs. It sounds as if her father could learn something about himself through the diagnostic process. It would probably help family dynamics if he would agree to get assessed, too. If you apply for an EHCP and are successful, you'll have a better chance of a place at an oversubscribed school and at out of catchment schools. Unfortunately it usually takes longer than the statutory 20 weeks, as most parents need to appeal. A college sounds like a good idea. My daughter is currently too young for college but she agrees that a college is much better than a school or six form (no uniform, more freedom, free lessons, more individual subject choices etc) and she'll move from home ed to college as soon as she's old enough.

You can't find reliable waiting times online for Right to Choose now because of the ICB funding limits. You could try phoning/emailing but I don't think the providers even know themselves.

Hi op. Your entire post is my life, too. Only differences are my dh is here at home with us (but has limited understanding) and my dd is actually enrolled at an online school. I have no advice and was actually looking at the SEND board specifically today because I needed to see something to make me feel less alone with it all. It's honestly the hardest thing I think I'll ever go through.

Currently out of schools ourself. The second child I’ve had to home educate, this time because there is no school who will take her and no specialist places available. We have created a points system around daily tasks and socialising with the aim of a treat at the end- with my daughter this tends to be some toy or plushie but with my son it’s gaming (his rules tend to be around school attendance, getting ready on a morning and an early night). We started off with simple things like my daughter and son have to pick one activity a week of their choice and they get 10 points. It seems to be a motivator for my son who wants to be challenged and will do more but for my daughter it’s the push of just going out once, whether it be to the park, soft play, horse riding (she doesn’t have to ride the horse if she doesn’t want to, she can feed the horse or just look around the stables- local centre have been great. It’s all about getting some socialisation where she has interacted with some adults and even said hello to other children or maybe a conversation with one about the horses). Also, with my daughter it helps with some of the simple daily tasks. Start small and just try and build on it. The local authority just want to see evidence that you are trying to socialise her and the more you explain how difficult it can be in detail, the more they can help support her. It may be in this time you find ways to help her with her anxiety and that is evidence that could help her back into school with the right support. Have you thought about some forest schools, tutoring. Have a look on Facebook as there are so many home schooling groups that you can join and just maybe meet up with other mums. It helps when you know some of the other mums because the chances are they know what you are going through and it’s less isolating if you have someone in the same situation.

@Crazyhousewife23 in case you decide you no longer wish to EHE at any point, there are options even if it is inappropriate for provison to be made in school. You can pursue EOTAS/EOTIS. Also, unless the schools are wholly independent, on its own being full is not enough of a reason for the LA to refuse to name the placement, although LAs sometimes force parents to appeal, and the schools can be named even if they object.

i came here also looking for some solidarity among parents in similar situation as mine. My daughter is 11 and I have had to fight to get a referral to camhs. She was diagnosed with ASD 3 years ago and then put back to the bottom of the queue for another 3 years wait for adhd diagnosis. In the mean time I was emailing camhs monthly telling them her behaviour (making herself sick, self harming, running away, stealing, harming others) requesting them to see her sooner. I was told over and over no.