Feel so let down….. Anyone any ideas????


As a mum of 5 children of whom all have several disabilities, at the minute am feeling very very frustrated, angry and sad.  All my children as you know have the condition FACS SYNDROME and this ultimately leads onto the Autism spectrum.  This is proving so so difficult at the minute.  They all have different traits of it.

Luke in particular is quite bad…the slightest noise he is covering his ears, if his brother or sisters look at him, the noise coming from eating dinner will automatically set him off “on one”

Erin is very rigid and hyperactive.  She cant control the volume of her voice and is very loud, having to tell tell her to use her quite voice.  Her understanding of listening is very limited at times in which you have to maybe repeat yourself 3 or 4 times.

Lauren is your typical “clapping hands” and would happily sit for hours clapping.  In which she sings along to (mostly Bieber or The Wanted, One Direction) After a while you can tell her to stop but she reverts back to doing it.

Anyone whose children have Autism will understand this, so as you can imagine with a mix of hand-clapping, loud noise and tantrums its very difficult dealing with different degrees of Autism.  Being a nursery nurse I have done countless courses and fully understand all this and know signs and symptoms.  It is alright getting a diagnosis of this, but what next. There doesnt seem to be any help offered.  Ive done the typical “Webster Stratton Courses” and even when following these strategies through doesnt seem to help.

It is proving so difficult particularly on me and my hubby.  The frustration is just overwhelming and its getting to a point where I want to bloody scream .  I’m not Wonder woman, dealing with one Autistic child is hard alone but throwing 5 into the mix is so so difficult.  I have to try and seperate the children but really dont want to do this as they are brother and sisters.  I do have my health visitor coming in the next few days (of little help).

At the minute am just having a rant and trying to come up with a solution.  What that be I dont know, but I feel as though Drs and GPS are not giving the proper, full advice for parents with Autism.

.

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3 thoughts on “Feel so let down….. Anyone any ideas????

  1. It seems to me it’s vital that you get decent breaks from them. I have four children and the relentlessness of being around them – arguing, shouting, drumming anything they can find — can drive me mad. Time off, even in small chunks, is so, so precious for my mental health.
    Mine are not autistic but one has T1 Diabetes and daily emotional swings associated with it. I can’t imagine dealing with your situation. I would think it even more essentially that you get away and express yourself now and again.
    Do you do anything like yoga or meditation? Do any of your children qualify for respite care? Do you have family around?
    I feel I’m probably not being helpful or saying anything you haven’t already thought of but I wanted to reach out to you none the less. Can you go and have wine with girlfriends now and again? I have girl’s nights in sometimes when my kids are in bed. Easier than finding babysitters and cheaper than the pub.

    • Thanks for reading and replying, was having one of them days….where everything seems so bleak. I do try to have me time, go spinning 2x a week and find it does help with all areas…depression, weight and the social aspect. Very demanding being a mummy….but the best job in the world x x x x

  2. Do doctors or HV’s ever help us in a way we need? I don’t think they do. Mine certainly never did and my HV was a complete waste of space.

    I think respite is a must. It’s something you need to pursue without delay and I would hazard a guess you will have a damn good case.

    Good luck and keep us posted.
    CJ x

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