27 September 2011

Harvest Festival

What a hot day today, celebrating Harvest festival at Izzy's school, with Home made soup, and fresh bread.  There we all sat on the field kids parents, teachers, sun shining.
  OOO poor Daisy gets hot and sweaty, and over heats in her helmet .........(she always wears it now when collecting the kids, as it gets hectic, more so as she wants to walk everywhere now!)  Id rather be safe than sorry here!
 ......... then sipping on my pumpkin soup, I see Daisy , sicking, like she had a pump in her belly , pumping it out, it didn't even touch her lips.... even as i carried her away she was at it, it was every where. I felt so bad all the kids and parents must of really enjoyed there soup after seeing that!
Thanks Daisy, I wouldn't have you any other way.  Great singing Izzy! and honest the soup was the best Ive tasted.xx 

21 September 2011

Services? Policy? Referals?

Had an appointment today, well to be honest.....its the 1st appointment in a long time. Ive been ignoring everyone other than family and friends. I gave up on it all ages ago, but no-one noticed!! I'm buggered now anyway as know one is going to snap there fingers and sort everything for me, the kids still need feeding, and carering. Its just Daisy's needs are so intense, her head has now got open scabbing areas again due to her helmet and the heat. Bringing up 3 kids is harder than i ever expected. Mark still floats around in his bubble , sometimes i think hes the only thing that keeps me sane. Wheres my energy gone .......appointment was OK, just want this housing crap sorted so daisy can get her own room to sleep in.. a sex life would help right now! (sorry Aunties,please don't repeat to mum nor dad!!)
  I don't think it'll be long before she'll tips that travel cot, there so light weight. I cant fix it to anything as i need to move it daily to get in my wardrobe, even though theres hardly any of my clothes in there, all the towels and bedding lives in there also. Slight squeeze! She still has no where safe to play, and still has to be within arm reach so i can protect her head it need be, why didn't the council build houses with the consideration of a Children being born with a rare syndromes meaning parts of protective skull being missing, these doors and kitchen units, door frames, door handles, stair Bannister rails, even the plumbing under the bathroom sink is a life threat to daisy.   didn't they think of this!?!...  Ok fair enough they weren't to know, and nor where we until Daisy birth, and 15months on, I'm still begging for help, begging for my child to be safe in her own fucking home... yep i swore again, to be frank i want to get that council lady and shake her hand, because its confermed.....its all about the cash..... ! welfare of kids my arse, Daisy could die any minute if i take my eyes of her, and no she wont keep her helmet on, you try making a toddler wear a hat they don't want too.! I getting lower and lower by the day the needs of my children are becoming more intensified every day. Daisy care needs change every day, as she reached new heights..I missed so many appointments for her, i cant bere it, i ignore calls and cannot think about the tasks ahead, im bombarded with lists before i know it, hence the lack of blogging data latly. I cant even take Daisy in the garden due to the bloody great apple tree, with branches that spread over my garden bombing down with the biggest cooking apples ever, even Daisy's hat couldn't take the fall of 1 of them bad boys. Come back Jenny !!! I miss you (Jenny is my 'dial a friend' from a charity that supports mums with children under the age of 5, a few hours visit with a cuppa can mean a lifetime, sometimes a lifeline for mothers who just need that little piece of sanity!)  Jennys a volentee , with all my problems, the kids school attendance issues and my sons mental support worker mettings not going to plan, with daisys needs,appointments, and stress of life im shocked after the times i rang social services for a assesment for houing safty, or for advice or help, they turned me away numerous times!!. Without my dial a friend id of been in a very dark place now. The social services are now making plans to help after i rang and asked if it had to get to the point where i left my kids on the side of the road somewhere, because it wasnt getting better. most of my energy has gone on reading policys and regulations, following proceeduares to get 'the services' involved, because with out that in black and white a self referal to places that accecp self referals means no support or help needed yet, that family can go from bad to worse before they met the criteria (so they say) to get the much help they need!.   normaly to little to late, parents of disabled children have the highest divorse rate, hurrr just my luck i never married (I dont know whats worse).
    so here i am tired, worse, angry, stressed, upset, letdown, a basic emotional wreck that really doesnt feel moving would be suitable given my daughters needs, and my role as her carer. Its not a case of administering medicine at 6pm, its a case of every minute shes awake having her next cheeking move imaginged in my mind so i can assess the risks and change whatever may kill her. If i missed this i wouldnt be a naughty carer that has administered medicines at 6.10pm rather than 6pm, in most casese flexability is varyable, but not 1 second flexability with Daisy, and not 1 second behind. but the coucil say she hasnt got a mobility disability, err yes she has when im forsing her to be straped in her buggy when i cook or put the rubbish out, sceaming her little head off, because shes not safe in her own home, to play, or watch tv, or safe in her own garden. even her bed is unsafe!! FML!!!
As always Daisys unaware of all the stress i hope, happy and healing still, thats my girl....TOUGH AS BOOTS XXX
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