Feeling trapped being main carer and educator — Scope | Disability forum
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Feeling trapped being main carer and educator

Samluv85 Community member Posts: 3 Connected
Hello Everyone I dont know if im in the right place but feeling very low and trapped currently sorry for long post.....

I am a mum of 3 children, my eldest passed in 2020 (Mental health) age 17 yrs and spent most of his school life fighting school system to support him but bullying and late diagnosis was part of the issue.

Following on his sister struggled through lock down and when she started high school in 2021 the wheels had already fallen off extreme anxiety and new school just escalated. She became EBSA and meetings referrals to assessment of ADHD (still waiting), CAHMs, assessment for EHCP (Still waiting for decision) to get her a place in a specialist provision. Been home educating her since September 2023, online schooling which we pay for plus additional activities, she has improved greatly and were hoping this chapter is nearly over and look to the future in the next 2 months. However its been exhausting.

My youngest son aged 7, ASD diagnosed covid started while her was in nursery, and the stress of losing his brother, the home learning which he ended up being in school 3 days in a class of 10 in reception, but as things got back to normal he struggled to cope. Moved school in yr 1 to a school with more sen support however bigger. Started positive but last 12 months he has started to struggle with EBSA.

Numerous adaptions for school, referrals, and been great support but he is now at the point we are home schooling, and feel he is struggling with separation anxiety from me, and even leaving the house now, offers of favourite activities, he just doesn't want too. Its so worrying. Looking a support through Barnado's and possible look into a SEN school but its if he qualifies. He does have an EHCP after 2 years of fighting.

So Im trying to co-ordinate appointments, home education for both children, housework, and I also have chronic illness (Fibromyalgia) but also ASD myself and referral for Chronic fatigue syndrome. My husband is working 8-4 supporting us and does what he can when hes home as normally I end up in bed asleep. Feel so isolated dont really have friends, my 1 friend has her own struggles.

My mum is severely disabled but tries to support when she can. My dad works and there has been issues in his marriage, so I don't want to burden him with my issues and to be honest I'm embarrassed and ashamed of how my life has become. I feel like such a failure, not working, cannot get my kids to school and just feel hollow and down and overwhelmed.


  • Hannah_Alumni
    Hannah_Alumni Scope alumni Posts: 7,912 Disability Gamechanger
    Hello @Samluv85

    Welcome to the community.

    I wanted to firstly say, I am so sorry for your loss and sending you my condolences <3 

    It sounds like you have been going through such a difficult time with the kids and schooling but have been asking all the right people for help and support. I'm so frustrated for you that there still are elements where you are waiting. Please don't feel like an embarrassment, burden or failure you are fighting for your kids to get the best from education with all the support needed for them. You are super mum! 

    I am concerned that you are not getting enough time for yourself. I would encourage you to look at the NHS talking therapies for those days you feel low and just need that someone to vent and talk to. 

    I was wondering, are there any local activity centers or after school style clubs (not necessarily at a school) the children could attend so you get some rest? 
    Hannah - She / Her

    Online Community Coordinator @ Scope

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  • Samluv85
    Samluv85 Community member Posts: 3 Connected
    Hello hannah thankyou for reaching out I have reached out for therapies through NHS as I know I need support.

    I am looking into classes for my son but due to his ASD its hard to find a suitable place for him. We are under HEF activities for easter im hoping to get him into some clubs for him aswell as me.

    I feel like im fighting the system and losing, the stress is exaccibating my fibromyalgia and feel like im no use to anyone currently. 

  • bookrabbit
    bookrabbit Community member Posts: 196 Pioneering
    You absolutely are not a failure. You are everything to your children, doing your absolute best which is all anyone could do.

    I was in almost the same situation twenty years ago and I know how hard it is. The way I lost my eldest son was different and I was a single parent rather than having a partner but otherwise I ended up home educating my two youngest children and had/have fibromyalgia. My youngest also had/has ASD, as do I, so the situation is very similar although you seem to be doing a better job of asking for help than I did. I got none at all. Which is why I am in such a mess still. So keep asking for help. And make the most of having a partner. I was entirely alone which made it very very lonely and difficult.

    Home education worked well for us for the most part. My middle child now has a masters degree and a good career. Youngest however is not doing well because we made the mistake of moving back in with my mother and we were subjected to domestic abuse by my sister and her boyfriend and are now homeless but they write a fairly popular fan fic and make money from it through Patreon.

    So home education can be a very good idea. But it does demand a lot from a parent. I don't regret it though despite the burnout I experienced by the end. After what we had been through with my eldest it gave them a really good set of non judgemental connections in the community through local home ed groups and kept them from a lot of the casual cruelty that goes on in schools as well as enabling them to retain their natural curiosity instead of having it stifled by being told what to learn about. (I practiced what is known as unschooling rather than following a curriculum.)
  • Samluv85
    Samluv85 Community member Posts: 3 Connected
    Bookrabbit im so sorry to hear what youve been through esoecially currently with your sister i hope youve reached out to housing to help you and your kids. I know how hard it is to ask for help, i email mostly but will speak if I have too but takes alot out of me. Were you late diagnosed asd? I was 35 and still figuring it all out. We do what we for our children, if im honest i do basic english, maths and science and the rest is their choice. 


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