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introduction, help and support

Missyd33

Hi everyone,

My name is Diane, I am a mother of two sons aged 9 and 12 and am married and work full time at a childrens hospice. My 12yr old joshua was diagnosed with Aspergers in Jan 2013. Me and my family moved from London to Kent in Aug 2013, joshua is also incontinent day and night, is dyslexic, suffers from CVS (cyclical vomitting syndrome) and also has huge anxiety issues. Since moving I am struggling to get the help and support my family needs to cope with day to day life with joshua, especially school! Joshua is not statemented and attends a mainstream school which he is struggling with as there is no support in place to help him cope, I have contacted various people and he is under CAMHS but due to long waiting lists no support is in place for us as a family. I would appreciate if anyone has any advice for me.

Thanks in advance

Diane Smile 

Parents

  • Hi Yorkshirelass,

     Thank You for your kind words.

    I think that very often parents of children on the spectrum become issolated and have to battle on alone much of the time. I have done for years and wondered perhaps it's just me? However, when you come to a forum you realize their are many fighting the same uphill battle. My knowledge is actually very limited really, but i'm happy to pass on links or info to others (If I can remember where to find them) in order to help.

    A few years ago I was at breaking point. I'd just completed a tribunal alone with no support and like you I felt I'd let my son down with the level of support agreed. My husband was also unwell and I was struggling to start a new business. When one more thing fell on my door mat, it was the straw to break the donkeys back. It nearly, killed me in fact. Had i been a member of the community then, things may not have been so bleak.

    Sadly, i'm very slow to learn and process info. It takes me a while to understand the consequences of certain things. Talking to people here helps me. Firstly, to realize i'm not alone and secondly, that you, myself and others benefit from such experiences shared. If i'd had greater support back then, i would never have reached such a low, i'm sure.

    A word of caution though. Be kind to yourself. Parents like us often reproach ourselves for things we should or could have done. We can only act on the advice we are given at the time. If that advice was wrong, their is little we can do to change it. I know you are angry, but you will be able to channel that now into better support for your daughter.

    When you mentioned about CVS I remember seeing a video about anxiety. Am I right in saying this is a stomach migrine problem? I've posted the link, if it's of any help. Their is a strong link between health and anxiety levels and stomach, bowel etc. (the seat of emotion, lets face it) are often affected. See if any info in this either sounds familiar or helps in some way.

    www.youtube.com/watch

    I'm Glad your daughter feels better. Few understand how draining supportiing those on the spectrum can be when they suffer so much. 

    Take Care and thoughts to your family,

    CoogyBear XX

Reply

  • Hi Yorkshirelass,

     Thank You for your kind words.

    I think that very often parents of children on the spectrum become issolated and have to battle on alone much of the time. I have done for years and wondered perhaps it's just me? However, when you come to a forum you realize their are many fighting the same uphill battle. My knowledge is actually very limited really, but i'm happy to pass on links or info to others (If I can remember where to find them) in order to help.

    A few years ago I was at breaking point. I'd just completed a tribunal alone with no support and like you I felt I'd let my son down with the level of support agreed. My husband was also unwell and I was struggling to start a new business. When one more thing fell on my door mat, it was the straw to break the donkeys back. It nearly, killed me in fact. Had i been a member of the community then, things may not have been so bleak.

    Sadly, i'm very slow to learn and process info. It takes me a while to understand the consequences of certain things. Talking to people here helps me. Firstly, to realize i'm not alone and secondly, that you, myself and others benefit from such experiences shared. If i'd had greater support back then, i would never have reached such a low, i'm sure.

    A word of caution though. Be kind to yourself. Parents like us often reproach ourselves for things we should or could have done. We can only act on the advice we are given at the time. If that advice was wrong, their is little we can do to change it. I know you are angry, but you will be able to channel that now into better support for your daughter.

    When you mentioned about CVS I remember seeing a video about anxiety. Am I right in saying this is a stomach migrine problem? I've posted the link, if it's of any help. Their is a strong link between health and anxiety levels and stomach, bowel etc. (the seat of emotion, lets face it) are often affected. See if any info in this either sounds familiar or helps in some way.

    www.youtube.com/watch

    I'm Glad your daughter feels better. Few understand how draining supportiing those on the spectrum can be when they suffer so much. 

    Take Care and thoughts to your family,

    CoogyBear XX

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