Parents, carers and disabled parents
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Emotion support for carers

My son is now 7, he was born with multiple conditions and its been hard, but the good news is most of his conditions are managed and supported and school is collecting evidence for the ECHP so now i'm just looking for a little support in dealing with my side as a carer.
It's difficult dealing with the behavioural bits and providing emotional support is 24/7.
I have things like hobbies and i'm doing mindfulness to manage my own anxiety and PTSD but the guilt of having me time and doing things that don't benefit him is starting to get more and more.
I know we all need to take care of ourselves but it makes me feel selfish.


  • KENDAL123KENDAL123 Member Posts: 13 Connected
    Hi I am going through the same thing my son is now 7 have managed to get the right support in school but I am challenging his behaviour at the moment being his career isn’t easy and he doesn’t sleep much at night. I don’t think I get much support for myself I take each day as it comes. My son doesn’t have much understanding about people’s feelings because of his brain damage so it makes things hard to explain things too him even when am having a bad day x
  • Pippa_AlumniPippa_Alumni Scope alumni Posts: 5,851 Disability Gamechanger
    Hi @Brookesie, welcome to the community!

    Thank you for sharing this with us- it's a really positive thing that you recognise the importance of caring for yourself, too. I wonder if you've tried Carers UK? They have some great support and advice information online, and also an advice service where you can talk to the team. What do you think? All the best, and do keep us updated.
  • BrookesieBrookesie Member Posts: 9 Listener
    I know what you mean KENDAL 123. I feel the same. My husband works, I'm the carer. My 9 yr old son struggles with understanding his brother, the fact he has different consequences and less responsibilities feels unfair. Even though they both get time with me the older actually gets more attention as I do the homework one on one and he has a lot more homework than his brother. I feel like I spend a lot of time helping them understand each other well trying to help them understand each other. My youngest has ASD, ADHD, PDA, dyspraxia, Klippel Feil syndrome, TOF-OA, learning and developmental delay and chromosome 16p11.2 deletion which comes with behavioural difficulties. He's amazing and I wouldn't change him for all the tea in China. Id just like to feel more supported and understood by those closest to us. My family in South Africa and New Zealand are great I just have little in the UK. A lot of friends know his conditions but very few truly understand or would know how to support, even though most days just a hug would do.
  • BrookesieBrookesie Member Posts: 9 Listener
    edited May 2018
    Thank you Pippa_scope its just very little in our area for support. I have some really good friends but often feel a burden or just misunderstood. I worry that I turned into the friend that always has something going on so often end up saying everything's fine when asked if I'm ok. Partly because its easier. Also most people are just being polite and don't have the time to listen to me roll out all that's going on. It does help to just say what's going on without anyone having solutions but most look at me with that blank distressed panic and I can tell they're thinking "****, what am I meant to say to that!" There's always something going on and I don't want to make others think I don't care about what's going on with them but you can see some feel guilty when they tell me everything with them is ok because they know its not the same with us. so some just say hi and don't even ask how things are or pretend to look away as I pass or quickly start a conversation with someone else to avoid talking. Having a child with disabilities is hard enough without this.
  • FionaAFionaA Member Posts: 15 Connected
    Hi Brookside

    So share your feelings and my friends and relatives have had the same reaction if I share. So I got frustrated and thought about it and then told them all that waht I needed to hear was along the lines of 'totally agree with you Guys, that is really ****'. So now they have the words they say them and then we crack up laughing which relieves the tension. Hope it works for you. Hugs hugs and yup, some if it is really ****'!!!! Fi
  • BrookesieBrookesie Member Posts: 9 Listener
    Thanks @FionaA I've never though about doing something like that. It might relieve them to know a good ol hug and saying 'yeah that sucks' is sometimes the best thing to say.

  • FionaAFionaA Member Posts: 15 Connected
    Sorry my predictive text took over your name Brookesie. Glad you will give it a try. It's very hard for those who actually care to know what to say so I hope you can help them 👌good luck !!!!!!!! And please try not to feel selfish as it's obvious you are not since you worry about it 😄. You sound to me like a pretty fabulous mum who needs to carve out a bit of 'me' time just to recharge your batteries. And in the long run if your batteries run out your child will be the loser. Hugs hugs hugs
  • BrookesieBrookesie Member Posts: 9 Listener
    Thank you @FionaA id love to feel recharged. I need to find a way to let go of some thing to make more 'me' time. I think I should give up worrying I seem to spend a lot of time doing that, that and housework lol. My two are attention seekers so I'm letting them be bored so they find their own way and stop pestering me every ten minutes. I've also cut back on overthinking as it turns out there's not much you can do after the third time you stress out over something that might not even happen!
    I find the big issue is quality time. I can get ten even fifteen minutes of watching telly, gardening or crochet then it the usual "Muummmm" . I need to find tool that help them understand I'm busy or 'me' time. Heck at this rate I'd be happy if I didn't get interrupted having a wee! I wonder if a schedule would work if I did block colours for them to see visually mums busy and one on one time so they feel like they get equal amounts of me.
  • BrookesieBrookesie Member Posts: 9 Listener
    Today I went to a Mindfulness class and it was great. I was able to let my feelings wash over me and be ok. I let my thoughts go through my mind without scrutenising them just letting them come and go was great my mind felt less heavy afterwards.
    I felt like my 'me' time was really well spent.

    Definitely recommend it.
  • FionaAFionaA Member Posts: 15 Connected
    So good to hear  :):) well done you!!!!!!! Fxxxx
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