Upset and stressed — Scope | Disability forum

Upset and stressed

olisurbanfox
olisurbanfox Member Posts: 3 Listener
my son has dysphraxia and developmental delay. I’ve always had to manage his affairs as he gets into difficulty. He is 28 years old and sick to death of having to speak about all the things he cannot do to benefits and council officials. I feel so guilty having to point out things oliver struggles with. I suppose this guilt I feel will never go away.

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  • [Deleted User]
    [Deleted User] Posts: 1,748 Listener
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  • JennysDad
    JennysDad Member Posts: 2,299 Disability Gamechanger
    hello @olisurbanfox

    I am very sorry to read of your hurt and hope you are okay. I can't help with the maze that is disability benefits these days, but I am struck by your reference to 'guilt', and wonder if it is that you hold yourself somehow responsible for your son's condition?
    I have found that extraordinarily common among mums of children with medical conditions and disabilities, mums haunted by the ghost of the idea that they must somehow have 'failed' or have done something wrong in order to have produced a child with such conditions. And it is patently not the case, except very very rarely when, for example, a mother has elected to abuse drugs or alcohol during pregnancy.
    Unfortunately, those very, very rare cases where parents have made mistakes (and, after all, that is all they are - it is not as if even they set out to harm their children) sadly reinforce the tendency of mums to blame themselves, somehow, for any problems their children have or develop.
    I have known mums of children with CP and other conditions which have arisen from strangulation at birth by the umbilical cord to somehow manage to feel that they had in some way 'failed', which is patent nonsense. I have known it in a mum whose 40 or so year old daughter has had serial problems which first showed themselves in endometriosis, a condition which is only now considered as 'theoretically possibly genetic'. No-one, surely, should be able to hold themselves responsible for a condition which medical science scarcely understood and could offer no genetic counselling for at the time that it occurred? Yet this happens all the time.
    Whatever your son's condition is, it is NOT your fault. You have given him 28 years of devotion and love. "Oh," you may possibly say (I know I could when my daughter was alive, "but there are times when I have been so angry with him!", and there you fall into another common error. You may well have been angry at life, you may well have been angry at whatever god, if any, you believe in, and you may very well have been angry at the condition, its consequences and the feelings of helplessness and hopelessness which come to parents in our situation, but that is not anger at the child, that is not, in any way, an absence or failure of love, merely a consequence of it.
    Love yourself, respect yourself, for all that you have achieved and for your commitment to your child. You are NOT to blame.
    Hope this makes sense.
    Love to you.
  • olisurbanfox
    olisurbanfox Member Posts: 3 Listener
    Thank you for taking the time to respond. I guess m just having a tough time at the moment. I’m worried about when I die. I Love him so much but I’m so afraid of his welfare when I die. I’m Having to apply for a social worker to help me and I have to apply for housing benefit as he has no longer got a job and it seems I’m having to point out things he struggles with and it makes me feel terrible. I wouldn’t change my son I adore him but having to speak on his behalf is very very crappy.
  • stephenjohn
    stephenjohn Member Posts: 44 Courageous
    Love and hugs ...take a step back and just see how great a job you are doing ! It infuriates me why government departments can’t talk to each other ,it doesn’t have to be like an inquisition all the time ,some time the stress is unbearable,but if we the careers don’t do it then who does? Xxxx   
  • JennysDad
    JennysDad Member Posts: 2,299 Disability Gamechanger
    hi again, @olisurbanfox
    I remember only too vividly the fear of what would happen to my daughter if she survived beyond my lifetime, or even beyond my ability to do for her the things I did. I understand your pain, and it is harder for you in that he has already survived into adulthood, which my daughter did not.
    All I can do is listen (unless you should happen to live somewhere near me in Surrey), and I listen with respect and admiration for what you have already achieved.
    I wouldn't have changed my daughter, either, and a quarter of a century on I still wish she was here for me to hold and love as I held and loved her then.
    I am here and listening, as are others in the community.
    Love and hugs (to quote @stephenjohn)
  • Pippa_Alumni
    Pippa_Alumni Scope alumni Posts: 5,799 Disability Gamechanger
    Hi @olisurbanfox, I'm so sorry to hear that you're experiencing guilt and stress. It certainly sounds like you're dealing with a lot. I hope at the very least you find comfort from being a part of the community and knowing that you're not alone. Do keep us updated with things, and we'll assist where we can. 

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