Parents and carers
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Feeling hopeless and resentful

Hi everyone. I'm new here. I just wondered whether anyone feels as I do.
I have a son with a severe learning disability, language disorder and suspected autism. My husband is a great Daddy and does his share of parenting/caring as well as working full time. I love them both. We live in a nice house and have friends. But .... recently I've been feeling very down, depressed and tired most of the time. I feel like I don't have a life of my own and I just exist to facilitate my son's life and my husband's life. I'd love to have a job but I don't work as I'm still driving 50 miles a day doing the school run. Prior to having my son I worked full time for 19 years and I really miss it. I've tried to have a career as a freelance writer but, over and above a few projects for the same client, it hasn't really happened due to my lack of confidence in finding new clients. Although our son is making progress (slowly) I feel trapped by my circumstances and just see the future being more of the same drudgery. What is the point of it all? Unlike most mainstream parents, I can't look forward to a time when our son will fully "grow up". We don't even know whether he will be able or want to live semi-independently - ever!
I feel horribly guilty for having these feelings, but it's got to the point where I actually regret having made the decision to have a baby. I had ambivalent feelings about the whole thing anyway - why didn't I listen to my gut?! I feel like it's ruined my life.
Has anyone else felt this way? Can anyone give me any advice please? (I'm on a waiting list for counselling). Thank you so much.

Replies

  • JenniferUJenniferU Member Posts: 124 Courageous
    Hi @Jean_Genie,

    A very big welcome to the community! I'm really sorry you're feeling so down at the moment. But there are lots of people on here who can help and give advice from very similar lived experiences. 

    I'm just going to name check some of our amazing community champions who will hopefully be able to offer you some advice.

    @Blue Frog is mum to a little girl with no diagnosis. 
    @abstractLucas has a son with severe learning difficulties. 
    @NikiM has a young daughter with cerebral palsy. 
    @YoungCarerOverHere cares for her brother who has autism and ADHD.
    @MaryB works with children with additional needs. 
    @Natasha Brown's eldest son, now 17, is at a full time specialist school. 
    @socksoff has a son with learning difficulties and autism. 
    @Naomi has a son who has GDD and is non-verbal. 
    @renacahill is Grandma to a little boy with severe cerebral palsy. 

    I hope that they can help you feel that you're not alone!

    Also, you say you love writing, and I wonder if maybe writing some kind of blog about your experiences might be a therapeutic way to talk about your feelings?

    And do have a look at Scope's parent befriending services: http://www.scope.org.uk/support/services/befriending/about-face-2-face

    Best wishes
    Jen
  • abstractLucasabstractLucas Member Posts: 79 Connected
    Oh yes yes yes - been there. Several times. Still feel like that sometimes. My son is almost 15, has SLD as well as multiple complex health conditions.  Being brutally honest (please don't hate me) in some ways, your life - or at least certain strands of it - has been ruined.  Things aren't the way you thought they'd be, the way you expected them to be, and are (right now at least) difficult to deal with.  I've had the same things run through my head, many times.  My son won't (realistically) be able to live semi independently, and I find myself feeling hugely jealous of other parent carers I know who are struggling with which work placement they want for their teens, or mainstream parents who are stressing about gcses - my son can barely hold a pencil, and can't read or write, and I wish my biggest worry was whether history or geography was the best choice!
    Sorry, I got sidetracked.
    Right now you can't see anything else in your life, so you're bound to feel a bit low - is there anything that you could do - for yourself - inside the school day?  Like Jen said, maybe blogging would give you a bit of space to concentrate on you instead of feeling like you're suffocating under a mountain of caring responsibilities! Or something completely different - does your local council run adult education courses?  I don't mean learn to speak Spanish  (though if that floats your boat, go for it) - maybe something like gardening or silver smithing or fused glass or yoga? I know it seems a bit random, but there are often good discounts for carers, and getting out and doing something non-care related might give you something to look forward to?

    (Also, if you're doing 50miles of school run a day, is that for your child with LD? Sorry if you know this stuff back to front, but have you looked into your child getting home/school transport (if they're at a special school) or maybe a personal budget? I don't mean to miss the point of your distress, but there might be some (relatively) straightforward ways to make things a bit easier.)

    Anyway, I just wanted to let you know that you are absolutely not the only parent to feel like this, and then feel guilty about feeling like this - sadly I think it's part and parcel of the lives we live.  Don't be afraid to be absolutely honest and experimentation, I it with your GP - you might be prioritised for counselling if they realise how much your daily life is being impacted by the way you feel.

    Take care
    Lucas
  • NikiMNikiM Member Posts: 36 Connected
    Hi Jean and welcome to the community! I understand how you feel completely. My daughter is now 12. She has CP is a wheelchair and communication aid user. I like many others have gone through ups and downs over the years with feelings of anger, sadness and frustration, I remember when she was first diagnosed walking into work, bursting into tears and telling some quite shocked colleagues that this was not the life I wanted for her or us. 

    You our would benefit from talking this through with a counsellor who specialises in disability issues , I know that helped me when I was at a low ebb. You also need to find something for yourself, have you considered volunteering rather than a paid job, it's far more flexible and less stressful than trying to juggle work with the demands of caring for a disabled child? It will also get you out of the house and out of your head for a while. Like you when I gave up work, it allowed me to focus too much on my daughters disability, my whole world revolved around it and I lost myself and perspective which affected my feelings of well being.

    I just want to add, never feel guilty for expressing your feelings, they are after all your feelings. Particularly not here. We all have difficult days, months, in my case the odd crappy year! But things can improve if you continue to reach out. Are your husband and family aware of your feelings and an they offer support? Or close trusted friends. 

    Hope pe this has helped. a little. You are not alone. X
  • diggs82diggs82 Member Posts: 1
    Hi 
    I am new to the group and just wanted to say that you have pretty much expressed how I feel right now. I have a lovely home, husband and  job I adore and 2 young boys. My eldest boy is 5 years old and has moderate learning difficulties, global developmental delay and physical difficulties such as hypotonia and dyspraxia. I generally exist day to day getting through one day to the next. I feel cheated when I am around happy friends and their 'perfect' children. My son has behavioural issues which is the biggest cause of my anxieties. He doesn't follow instructions, couldn't care less about consequences and sanctions and is generally naughty. It is starting to get to the point where his peers do not want to play with him as he is intent on ruining all games e.g. Destroying jigsaws, throwing balls over fences and knocking over Lego etc. I feel guilty all the time for not enjoying the time with him but it's a constant battle and I'm exhausted. I feel exhausted and depressed all the time. Does anyone know of any support groups for parents near Nottingham for parents of children with learning difficulties? We get lots of support at school for our boy and his education but I'm in need of emotional support for me as I can't keep going feeling like this, it's not fair to me or my little boy.
  • mary33mary33 Member Posts: 5 Listener
    I am also  new to this community, I signed in today as I am in in urgent need of practical advice, I wish I had found this site before. I have found counselling very helpful, so helpful in fact that I trained as a counselor myself, and volunteer at a community counselling centre, we currently offer 8 free sessions and have had many clients in your position, I have also volunteered at a local charity offering counselling and other services specificly for carers. this is in south Manchester, there may well be organizations like this in your area. This is really important as social workers and health professionals do not respect confidentiality if you express feelings like this to them, and you may find yourself subject to unwanted scrutiny making your life even more difficult!
  • Jean_GenieJean_Genie Member Posts: 4
    Wow! Thank you so much, everyone who has so kindly commented on here. I feel a bit better just knowing there are others who feel the same. How do I reply to individuals? Or is it done on this comment box at the bottom and by tagging people?
  • JenniferUJenniferU Member Posts: 124 Courageous
    Hi @Jean_Genie,

    Yes you can comment in the bottom box and tag people by using the @ before their profile name. You can reply individually if you click on their profile and 'Add comment.' Or you can also quote reply which will quote their response to you and you can write your reply underneath. 

    It might be nice to keep your replies on this thread though as many of you seem to be going through the same thing. 

    Best wishes
    Jen
  • Jean_GenieJean_Genie Member Posts: 4
    Thank you, @JenniferU, for the information and the lovely welcome. Re the blogging idea - this has crossed my mind several times but I have been put off by my guilt at how I feel, and also the knowledge that, even if I blogged anonymously, people who know me would be able to work out that the blog was mine - and I don't necessarily want to "bare all" to everyone I know.  I shall certainly check out the parent befriending service.
    Best wishes
    Helen
  • Jean_GenieJean_Genie Member Posts: 4
    Hi @abstractLucas - Thank you so much for your words of wisdom and empathy. You are right that strands of my life *have* been ruined. I appreciate your honesty - it's always best to face the facts, I feel, however depressing they may be.
    Yes, the 50 miles a day school run is for our son with LD. I could let my son go to school on transport, but I've never felt that it would be a suitable option for him as his language disorder is so severe that the escort may not understand him. Plus, I have trust issues generally with other people (other than family and close friends) looking after our son. I know one can't always judge a book by its cover but from what I've seen I don't rate the escorts who serve our son's school. I've also heard lots of negative stories about school transport from other parents. I think the LA has changed the rules now and we prob would not get transport as it's not our closest special school. I'm hoping that from 2017 he can go to a closer school and that I might feel differently about the escorts there. Perhaps if I meet one who seems patient and "switched on" enough to care about deciphering our son's speech and speaking to him in such a way that he understands....!
    And thank you for the volunteering and adult education ideas. I'll have a ponder on those thoughts.
    Thank you again for taking the trouble to reply to me so thoroughly.
    Very best wishes
    Jean Genie
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