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feel as i have totally let my son down

patrice

Frown feel as if the further i try for my son the more i let him down,  god i have never given up but i feel i cant fight any more , i have had a totall bummer of a ot which has caused a lot of heartache recently at a caf meeting ect, my son is now 10 he has ASD and hemiplegic CP love him to bits i also have  othe children age 6 and 7 my 7 yr old boy is deaf ,  why do i feel like this?  it not me ......the nurse for cyps we havnt saw for  nearly 3 mnths no help from her at all i feel i am left in limbo nights are terrible as he doesnt sleep and has night terrors she was supposed to be going to help me with a programme for him but hasnt been sighted, the school stating if i need help from their he needs to be assessed from there team for a diagnosis , why when he has already got hs diagnosis , fed up , really at tebottom nowFrown

Parents

  • My heart goes out to you Patrice. I have two sons with ASD and neither sleep very well. one sixteen and the other seventeen now. One of my boys has night terrors, sleepwalks and talks in his sleep, the other gets up and comfort eats in the night or doesn't settle at all. Like you I was in despair when fighting for my sons needs. Came home from tribunal after trying to fight single-handedly for his statement and just sobbed in my failure to get all he needed. To be fair we are only human. we can only do so much and that's all. Take a step back and a deep breath and try and get some perspective. If you are anything like me it will be hard to see the wood from the trees when dealing with such an imotive issue.

    If you think the regular services are not up to the job you might consider commisioning independant reports from a private OT. They don't come cheap, but they don't contain bias either. No hidden adgenda.

    OT, Speach & Language, EP, all would be helpful in getting a broader picture. If the support is for a statement all information, even your own commisioned reports, will be valid. I hope this is of some help.

    I suspect the reason you feel so low is that like me you have a lot to deal with. I could only manage one childs statement at a time and this led to delays in provision I felt very guilty about. Couple this with the everyday management of their needs and things will feel tough, but we are just human.

    One of my boys has been prescribed melatonin to help him get to sleep, but he now has sleep Apnea so he's been taken off it. I just put out a similar post re sleep problems myself on here and someone came back with Mohdoh. I've litterally just ordered some to give it a go, as I prefer natural remedies, however, by far the best results so far for my sons have been Osteopathic treatment, particularly cranial work. It's painless and has the effect of turning the volume down so to speak. Each person responds diffrently, but it's worth a try. Find a practiciaoner who's  verse in dealing with ASD if you can.

    Meanwhile try not to be so hard on yourself, you clearly have a great lad whom you love dearly. All will be right in the end, it's the journey that can be the tricky one to negotiate.

    Good Luck

    Coogybear

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  • My heart goes out to you Patrice. I have two sons with ASD and neither sleep very well. one sixteen and the other seventeen now. One of my boys has night terrors, sleepwalks and talks in his sleep, the other gets up and comfort eats in the night or doesn't settle at all. Like you I was in despair when fighting for my sons needs. Came home from tribunal after trying to fight single-handedly for his statement and just sobbed in my failure to get all he needed. To be fair we are only human. we can only do so much and that's all. Take a step back and a deep breath and try and get some perspective. If you are anything like me it will be hard to see the wood from the trees when dealing with such an imotive issue.

    If you think the regular services are not up to the job you might consider commisioning independant reports from a private OT. They don't come cheap, but they don't contain bias either. No hidden adgenda.

    OT, Speach & Language, EP, all would be helpful in getting a broader picture. If the support is for a statement all information, even your own commisioned reports, will be valid. I hope this is of some help.

    I suspect the reason you feel so low is that like me you have a lot to deal with. I could only manage one childs statement at a time and this led to delays in provision I felt very guilty about. Couple this with the everyday management of their needs and things will feel tough, but we are just human.

    One of my boys has been prescribed melatonin to help him get to sleep, but he now has sleep Apnea so he's been taken off it. I just put out a similar post re sleep problems myself on here and someone came back with Mohdoh. I've litterally just ordered some to give it a go, as I prefer natural remedies, however, by far the best results so far for my sons have been Osteopathic treatment, particularly cranial work. It's painless and has the effect of turning the volume down so to speak. Each person responds diffrently, but it's worth a try. Find a practiciaoner who's  verse in dealing with ASD if you can.

    Meanwhile try not to be so hard on yourself, you clearly have a great lad whom you love dearly. All will be right in the end, it's the journey that can be the tricky one to negotiate.

    Good Luck

    Coogybear

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