Parents, carers and disabled parents
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Im a mum of 4 amazing children - feeling totally alone

ems1979ems1979 Member Posts: 2 Listener
Im a newbie, so hello to everyone. I'm a mum of 4 amazing children, Chloe, Harry, Morgan and Jack. Harry and Jack both have disabilities and I've spent their whole lives fighting for help and support for them to thrive in the difficult world we live in. Harry has an ASD with learning difficulties, sensory processing disorder and tics and Jack has possible ASD and sensory processing disorder (we are struggling to get him assessed) and is diagnosed with epilepsy and selective mutism. Because he's select mute it's hard for anyone to see the real Jack. My girls have also struggled with mental health issues but are currently doing well. Jack has recently been discharged from CAMHS as they felt a diagnosis wouldn't help him and his recent epilepsy diagnosis made it difficult for them to work with him. I just feel totally alone, lost and I'm unsure how best to help my son when the services that are supposed to won't. If there's anyone going through a similar situation I would be interested to hear how your dealing with feeling helpless and the lack of support.


  • sophialobsophialob Member Posts: 61 Courageous
    Hi @ems1979! I'm so sorry to hear about your struggles and just wanted to say what a wonderful mother you are to your children and how well you are doing. I'm so sorry it is so tough but I hope that you will be able to find some help on here and know that you are not alone. Best of luck and sending good wishes :smile:
  • Sam_AlumniSam_Alumni Scope alumni Posts: 7,729 Disability Gamechanger
    Welcome to the community @ems1979
    I moved your post to the parents and carers category, it may be worth you having a look around that group and chatting with others in a similar siituation.

    We are a friendly group so jump in and get involved :)
    Senior online community officer
  • debbiedo49debbiedo49 Member Posts: 2,906 Disability Gamechanger
    You are not alone. Do you have a social worker or similar? Hope you get advice here. I work with kids with communication issues such as autism and I love it. If you would like to chat message me please. 
    I am a fibro warrior !💜♏️
  • ems1979ems1979 Member Posts: 2 Listener
    @debbiedo49 Thank you and no we literally have been left with no help or support and I've always had to really fight to get any. I recently went to see the local MP and they're going to write to CAMHS etc... to see if they can find out why no one is doing anything. I understand that these agencies don't like to label children if they can help it but without one it's making all of our lives very hard, especially with all the other issues within the family. My main concern is when he goes to secondary school in 2020, if I don't start the ball rolling now it will be too late. My kids are unique and I wouldn't have them any other way but I hate feeling powerless to help them.
  • Chloe_ScopeChloe_Scope Scope Posts: 10,653 Disability Gamechanger
    Hi @ems1979 and a very warm welcome to the community! Thank you for taking the time to share this with us all. Just wanted to say that we are all here for you and I hope the community can support you through the challenging times.

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